YOU HAVE A STENOSIS!!!!!!! Your motility is hunky dory if this stoma UNTIL the stenosis worked and your first one worked.
INSIST on another doc, if they MUST do a biopsy then go ahead and revise the thing PRONTO!!!!!! Then they will be satisfied that you have no motility issue, AND you will once again be able to pass waste.
Lay this logic on them. Say "MY stoma is so narrowed that you cannot get your finger in. It is so narrowed that I can get nothing but liquid out. I am going to waste away and die if you don't do something SOON!
I cannot believe this! I thought only in America and only with ME! But I see this is global. WHILE you are somewhat strong, get aggressive. This IS life threatening! IF need be, tell them is would be like if their rectum narrowed so much that they could only pass liquid and were not able to eat. This is no different!
GOOD LUCK. Auuugh! Also remind them that the only test for stenosis is the not being able to get the fifth finger in. These do NOT show up on CT's, not on retrograde enema's, and not on ileoscopies. My ileoscopy they used a pediatric gastroscope that is like a hair in diameter, of course that went in. Jeeze!
I THINK what they do not want to deal with is your obvious adhesions from your prior surgeries and from the peritonitis. DOCS NEVER Want to talk about
adhesions. They do have to cut them to make a new stoma as they need to free up more bowel. THEN if no adhesion barrier is applied, then the adhesions can grow back even worse because adhesions have some substance in them that when cut they like to grow back stronger. IF you get nowhere, flat out ask if this is the hesitancy.
IF SO, you are right there in Europe. Jens Pagels a GYN in germany is into Sprayshield adhesion barrier. He works with a general surgeon Dr. Linder.. They were reviewing my case as I was interested in SprayShield. BUT when I mentioned I had found a colorecatal specialist out west here in the US they did not go further with my case as they were not colorectal specialists.
You also have in Germany Dr. Mathius Korrell at Duisburg University Hospital. I don't think he is a colorectal surgeon but he could point you in the right direction. If worse comes to worse would you be able to come to the states? I could tell you by private message who would be
open to helping you.
As you know I am fighting some issues with my revised stoma being extremely narrow and going for soon consult. BUT I can eat significantly more than you can. I have been trying some very soft things. Stoma still extremely hard when I am standing or sitting and soft when I am lying down. Obviously it is being squeezed off by some structure or it would not be chronically hard. Plus the hole is now on the side, and I have to do a degree of gastric gymnastics, but jeeze, nothing like yours. Remember I ended up on IV's with my definitive stricture and lost all my left arm veins. You may be heading this route so remind your docs.
Be proactive. Rosemary
Post Edited (esoR) : 8/31/2012 9:54:02 PM (GMT-6)