Hi all......Well Here is my update, just got back a little bit a go and have been trying to process:
Dr. Chey's office was wonderful. My appointment was nearly two hours long. It was a very in-dept consultation. He had his resident come in first and go over a very detailed health history and then they spoke outside the room and then they came back in and spoke with me again and did a rectal exam.
First and foremost, he siad that he saw my anismus right away. He had me squeeze and then try to bear down with his finger in the rectal cavity and then with it out. He said "I have no funtionality of my rectal muscles, that they do nothing and that on digital exam my diagnosis is right on". He said my surgeon has done a wonderful job pinpointing my diagnosis and running the necessary tests. he also said that the only treatments for anismus prior to surgery are biofeedback (60-70% successful) and botox (40-50% successful). He said that if I had not tried the botox he would have had me try that first. Secondly, my PTwas trained by the University of Michigan, but he did not have the records from my treatment and that is the first step. He wants to know what she did, but I will tell you she was good and she did everything. He is going to call her at the end of this week and decide if the therapy I had was sufficient enough to definately rule out that is is not successful. He said that my case is going to be very difficult and that he feels I have gone through so much for such a young age. He thinks my case is rare and becuase of thismy case is going to be presented to the "think tank" at U of M which is an accumulation of physicians and surgeons within the GI world and they are going to discuss a plan for me. My husband I both asked if surgery (ileostomy) would be the next step if he does not want me to do more biofeedback and he said yes. He did not want to discuss it in further detail until he heard from my physical therapist and they discussed my treatment and her methods.
So its back to the waiting game which is the most frustrating part for me. He said he will be in touch, but gave no specific timeline. I asked him about sacral nerve stimulation and retal myectomy and he does not feel I would be a good candidate for either of these. He siad the nerve stimulation is used more for incontinence and that he has never seen it be used in successful treatment of anismus. I believe I have a pretty severe case of it.
He said that all of my symptoms run true to my diagnosis. My intense back pain is from my sm. bowel filling and from getting no relief. He said that the only thing able to leave my rectum is liquid and this is because my rectum is like a"tube of toothpaste and trying to squeeze tooth paste out of it that is not open". My nausea and weight loss ( I am down to 113) is from the mere fact that the waste does not leave my body unless in liquid form and I have to take so much laxatives that cause this nausea, hence decreased food intake, etc. He is aware of how little I am eating, my potassium issues, and my mass amt of MOM I take, but at this times understands exactly why I have to do it.....So I guess for now I just wait.
I do not know how I really feel or what to think, but I wanted to let you guys know.
Lizzie