@Doug K posted:Hi Kid,
I re-read your posts - and I feel your frustration having to rely on surgeons and doctors to help fix this problem. I have probably spent years researching medicines and different surgical scenarios- it is exhausting and scary - and the right answers are not clear. For me the thinking about what to do is almost as bad as the disease in some ways. This may sound crazy, but when I personally get overwhelmed with the myriad of paths to take - I write them down as a game plan- not in my head - literally on a piece of paper. This way - it prevents me from returning to the scenario analysis. I have it on paper. If I could take literary license here..
1) Write down your recent history of problems and medicines taken - so you have it. A list of phone numbers of pharmacies used and doctors seen.
2) Write down the date of the future meeting with JPouch reconstruction specialist- and write down all the things that you are going to ask him/her. Your path forward will depend on the data around fixing the JPouch. For me, if it was an 80% chance of fixing it - I would try to fix it. If it was 50%/50% - maybe it’s a no go. Without the data - Crohn’s - no Crohns - hard to know what to do at this juncture. Maybe line up a second opinion also. Write that down.
3) After you get the data on JPouch salvage - you create data on end ileostomy. New ostomy position..etc.
A written list is always helpful to me - because I feel like I am doing something.
In the long run - either you will fix the JPouch or go with the end ileostomy - either way you will be okay. Best Doug
I always like to make a list for everything too. Its very helpful!!! 