thank you everyone for your caring replies!! To answer some questions: I saw the head of board at CC Dr. Fazio and since he is no longer doing surgeries, he appointed his best surgeon dr. Zutchi to do my surgery. She has done a lot with repairs but not so much with patients who have Crohn's. There is a great risk of crohn's migrating to the area that would be surgically worked on so some dr's are hesitant to do any work. She is wonderful and I highly recommend her! She is doing her best to help me but because of my unique situation, there are alot of factors playing against me.
A bag is not an option yet. (That is my LAST LAST resort, for I really really do not want that) I no doubt have permanent damage but the next option is a surgical treatment called Sacral Stimulation. It is where a device the size of a pocket watch is implanted in your lower back with wires that lead to a small "chip" that is also planted in the lower region of the back that sends electric "shocks" to the sacral nerves that control the muscles down there. Only problem is the FDA has not approved it yet for fecal incontinence and only is it currently approved for urinary incontinence. My surgeon is very hopeful for this and it has shown to have GREAT results in all of its studies. Its nerve-wrecking thinking of having a device under my skin in my back but I am willing to do anything (but a bag) at this point. Waiting for the darn FDA once again to have a chance to get better. Although there were high success rates from this trial it is still, like anything else, not guaranteed. I have hope though!
I was thinking about getting an anti-anxiety pill to help things. If I "think about" going to the bathroom, sometimes it makes me have to go. Our mind is such a powerful thing, let me tell you.
27 yo Female, Crohn's, stricturing type- terminal illeum.
symptoms at age 2....Diagnosed at 6
Have tried it ALL Currently on Humira, Fish Oil, D3, Entocort, B-12 shots, Align, Multi