Back from hospital. HAd to go there as an emergency on monday morning after spending all night from sunday to monday in massive pain. Diagnosis: subileus. Surgery was pretty certain. But the docs tried some stuff which is quite hard to explain as I only know the German/Latin terminology.
Well, all in all the subilues opened up without surgery. The rest of the weekdays I slowly but surely started eating again while being in hospital.
@ threelions: I will try to answer all your questions as good as I can. If I forget something or something isnt clear for you, just ask again. But always remember that I am from Germany and we have a pretty different healthcaresystem. So what was an option for me might not be an option for you.
1. All in all you will probably shoot for two major surgeries: Colectomy and pouchcreation. Sometimes they can do both in one surgery. And one smaller surgery: connection of the pouch. Never ever let them do all in once (Comlectomy+pouchcreation is ok, but colectomy+pouchcreation+connection in one surgery is not). First you might think that if they do all in one surgery you wont have the ileostomy at all (not even for a while). But you run a high risk that your pouch doesnt work properly or even not at all.
Ask them how often the surgeon has done the pouchsurgery and how many they have a year. IT is very, very important that your surgeon has a lot of experience.
2. The bag is not painfull and after a while you wont feel it at all. Once everything is healed up properly you are fine. This can take some time but after a few weeks or even after a few days you are fine. You can sleep comfortably. Sometimes you might get up once or twice a night to empty the bag. But this depends when, how much and what you eat. How often you ahve to empty the bag over the day depends very much on the individual. Of course what and how much you eat makes a difference but for whatever reason some people produce way more stool than others (stool is over 90% bacteria). I empty my bag about 3-5 times a day. But never let it become really full. I eat a lot and very often. Some people eating a quarter of what I eat often have to empty the bag 7-8 times. In the beginning you will produce a lot more stool. Will get fewer and fewer.
The bag doesnt affect your day to day life very much. From time to time you go to the toilette to empty it. But people go to the toilette more often to pee than I go to empty my bag. So...
You might also want to change your clothingstyle if you liked to wear tight t-shirts before. As when the bag gets fuller you can see it through the t-shirt if it is pretty tight. MAybe I find the time to make a picture of myself in clothes with a full bag and I bet you wont be able to tell that I got an ileostomy although you know I got one.
3. If your colon is inflamed the less fiber you consume the better. So everything which is healthy for a healthy person is not good for you. That is what the docs tell you and it is logic and there is some truth to it. But if your colon is infalmed no matter what you do to degree as mine was it doesnt relly matter hwat you eat - you will always suffer. If you notice a differnce in your condition depending on what you eat - good sign. Avoid fibrous food as long as the colon is inflamed.
It is a bit complicated to explain what happens after the surgery. If you are lucky you can eat everything. If you got a bit less luck you will have to find out which foods to avoid (it will things which are very hard to digest like the skin of certain vegetables, raw corn or something the like). I could eat pretty much everything without any problems until last week. It was probably the popcorn which caused the subileus. But you can never say that for sure. You have to try it out. That is how the game is played.
4. Your surgery:
http://www.j-pouch.org/illustratedpouch/
5. 3-6 months after the surgery you will be able to run again without any problems.
6. Questions regarding medication are a bit hard to answer without knowing what you have taken so far. But if you PM me a list or post it here I can tell you what other options you might have.
For me the UC turned into a life to death war. I survived and now fight my way back to life. But the war aint over yet...
Dont wait too long before surgery.
I will now go to ride the bike and try my new necktrainingthingy (dont know how these things are called, you can hang weight from your head with).
The belt for swimming also arrived and I will try it out next week.
And btw. I got a crad for crique du soleil for my birthday from my parents (my birhtday is the 12th but the ciruqe is in a city nearby tomorrow). I f I hadd had the surgery I wouldnt be able to go there so I am very happy the surgery could be avoided as going to the cirque du soleil is one of things from my "things I wanna do before I die" list.
)
