Thanks I will email you. I am totally into email. I was in excruciating pain today as though some bowel was scarred to the inside of my abdominal wall and it feels like it is going to tear at any time. I do know at the end of the day when I have to take all that stuff that washes me out like grape juice and prune juice, I can feel a LOT of pain between the stoma and the naval. That is the direction the small bowel heads in from the stoma. I learned of that when they put in the catheter for the retrograde enema xray. I sooo wish I had let the GI doc do the ileoscopy, but when he saw how narrow the stoma was he said he likely could not even get the scope in. So stuff showed up on your CT and your retrograde enema xray. And my imaging tests showed nothing. Mine sure did not pick up whatever my issue is. If I make it to May 2 I will ask the GI if he would be able to see a twist on the ileoscopy and IF he had a pediatric scope maybe it would shed some light on my issue.
Was your feeling so horrid afterwards from the ileoscopy though? Or were you just going down and it happened right after the ileoscopy?
UC san Diego has some advanced imaging that they use for Crohns that could also be used for detecting small bowel narrowed by adhesions. I think it is Cine CT Enterography. I even wrote to them one time prior to getting in all this trouble.
Does DR. Talamini do adhesion take downs and stoma re-do's? Maybe I am wasting my time around here. Flying commercially there would not be good as flying with a closed stoma not such a great idea, but maybe I could get a low altitude medical flight, but then there are the Rocky Mtns. to cross. A train would take forever and I'm not well enough for all that jostling.
I wonder if he ever flies to other hospitals to work on patients, like I could pay him to fly east to help me. Not sure if docs do that but I have heard of specialists flying into here or there to work on patients. Let me know what he plans for you.
A LOT of how we do medically depends so much on where we live geographically and where we are able to get to.
Lying on my right side used to press my stoma
open and make poop come out in the night. Now it does not work. Believe it or not, I slept 12 hours last night and I woke up with a TOTALLY empty bag and not even any gas in it. Also when I am lying down there are absolutely no bowel sounds. I have NO CLUE what that is all about
. Other than it really scares me.
My friends and neighbors are being great! they are all so concerned. So many things in life I should have done differently. THEn of course avoiding going down this road but I did not know. Now I am like oh, if only I could go back to the "good old days" of having a working ostomy! How our expectations change with things. When it worked it was very do-able, not like we came into this world, but very do-able. I had been proud of myself for adjusting so well. I really prayed that the blessing the original ileo doc gave me would keep working. I thought for sure longer than 4 and a half years, but we never know. Let me know what Dr. T. says. You are sooooo lucky to be near him. I feel good things will come for you. Rosemary
Post Edited (esoR) : 4/24/2012 8:42:29 PM (GMT-6)