First, I met with a new GI (My old one moved, but I'm happy with this new one..he specializes in people like me). That said, he asked why my surgeon left the rectal stump in. There is only a couple small inches because much of it was diseased. My surgeon left it there because of my age (27) and the "chance" that we might be able to reconnect. Now that I have a properly functioning ostomy, I'm not sure how much I care to have my rectum back. I don't EVER have to worry about going to the bathroom! That is HUGE in my part..and if I'm going to be out for an entire day the next day, I can irrigate. Truly is awesome! I hate how "unsanitary" it feels, but I wash my hands and any surface I use thoroughly.. so I think that's ok. Anyway, he said if I don't have a take-down surgery, they will HAVE to remove the rectum completely because of the risk of cancer associated with it... anyone else have more info? I guess I"m okay with it..was just a bit stunned with the idea of yet another major surgery. He doesn't mean right now, but I'm sure within the next 5 or so years I will have to make that decision. Thoughts?
Second, he wants me on fibercon. The surgeon said metamucial, but the GI is at Barnes Jewish/Wash U and is CONSTANTLY involved in studies. In fact, he's the one that figured out where the pain was coming from (I have had trouble and have been in and out of the hospital for doubled over pain)... it's simply colon spasms from my Crohn's. He solved that with a 2x/day anti-spasmatic. Anyhow, I'm fine with the Fibercon, though it's technically a fiber laxative. My question is..is anyone else on it? And, if you are.. do you notice you have more output? I'm noticing my bag is filling quite a bit. It's toothpaste consistency, so it's fine.. but just still wondering!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old