Hi Dusty
I called this evening and left a message with the advocate. I think she will do her best to go with me as she has commented on going with me to see my GP in the past.
I will go to the dietician as I havent seen one before but if they tell me I just need to take metamucil, etc.. then I will flip.. Im tired of hearing people dismiss me by saying what I need without hearing how it effects me. If they knew what I was eating now.. they would probably think differently. I eat far too much sugar. I crave it a lot and I find it keeps the weight on. I flip flop between dioreah (u would think I would have learned how to spell this by now) and constipation. She might be helpful... I am willing to hear her out but I dont get how they can advise me when they all have a diferent theory about what is wrong. From what I have read here for over a year now...the Crohns diagnosis fits... and so does the endometriosis... but Im not a doctor. It scares me yet at the same time reassures me that Sarah's tests came back normal. My GI seems to be hinging a lot on the fact that my blood work is normal... He mentioned prednisone last time and mentioned that it would cause short bowel syndrome... another issue...
He wants me to have the lap done so that she can take biopsies to make sure. So, I am sort of appreciative that he is making sure but at the same time... Im in pain here.. something needs to be done. I m taking dialudid so it is a little easier to present well but I can feel that something is wrong inside and the scary part is it is getting worse and worse. My periods are definitley over the top when it comes to pain...
A new symptom (and I dont know what it is) is that there is the grumbling like when my stomach does it but it is a lot lower.sort of in between my small bowel and butt...it doesn't hurt but is very loud.
When I went to the ER, they did the roll up bedside ultrasound which came back normal. They also did chest x-rays and abdominal x-rays. All came back normal. The attending doc told me I needed to go to my GP and ask for a large ultrasound. I asked her if they could do one there and she said no, that there was no one there on a week-end to do it and I needed the larger one as it is more nuanced (she pointed to the ceiling). I asked the intern when I made the follow-up and she put me on dialudid and no CT or ultrasound was scheduled. My GI said he wanted me to have the last MRI and would arrange for the CT with NG tube to be scheduled 2 weeks after the surgery. I havent received a date yet but they told me they couldnt get me in before the lap. and they wouldnt do it unless I had 2 weeks recovery so they would arrange for after the surgery...
The hard part is I keep feeling hopeful that I will get answers with each appointment and I keep leaving time and time again with a different date and all these dates have added up to 3 years so far...I literally feel lob sided - my right side feels so full and I have a hard time standing straight up at times or initially.
I dont know... I feel like a colossal complainer and Im not getting anywhere...I have done everything they told me... I went to physio for 8 weeks when they thought I had arthritis... they told me I needed a new bed.... I took arthritis medication, Ive done the MRI's... Im not getting any better - I am getting worse. Maybe this is part of what makes Crohns so insidious (if it is in fact Crohns). I feel my GI thinks I have Crohns but wants more proof before putting me on prednisone. I had a lot of hope attached to the lap. - it is hard to maintain it when every appointment is a disappointment...
I know people on here understand me and what Im experiencing. My friends outside of here offer for me to go to a "food and drink fest" this week-end to help cheer me up...they dont understand and I dont know how to explain it... I havent seen them in a very very long time and I keep blowing them off thinking I will get help and wont need to explain it and I can pick up where we left off...
i dont know anymore. You guys "get it" and I dont feel invisible here which is part of what makes me think I do have it (along with the symptoms, test results, etc.).
Anyhow.. Im exhausted. Thanks Dusty
I really value your input...
thanks
Wendy