Thanks Barb, It was so kind of you to write. I feel like I'm not all alone now. I have to get ready for my husband's Sunday breakfast that is amazing. I wanted to let you know that I am so grateful...
Thanks. Yes, I have a Rheumy Dr., a gastro-surgeon, a colorectal surgeon, (nuero-stimulator) urologist, a cardiologist, a pulmonologist expert in Lupus & the Lungs, my primary care dr. is an...
Hi. I was finally diagnosed in 2007 by a hematologist oncologist with a bone marrow biopsy. It took 5 drs. & I'm not sure how many years to get a firm diagnoses. Unfortunately, after my blood was...
I would definitly get a 2nd opinion on that. Even a third. What do you have to lose. I was told twice that I would die. Once I was in a coma and heard it said. I've always looked at things related to...
I"m on my way to get mine. My dr., an internist, has told me that since being RX'd with CEBV I must have the yearly flu shot. I've gotten every year, since Grant was a cadet. Sandy B...
It's been 2 1/2 yrs. since my ileostomy. What you are describing is normal. They're the stages of loss and grief. You must go thru them all or you keep repeating them. I know I've experienced denial,...
With the thick output, one thing that will help a lot is drinking 8-12 glasses of water a day. Also, as you wean off the medication, your output will get thinner. And be sure to eatly. I eat at least...
The 3% peroxide did it for me. I learned about it on Shaz'z board 2 years ago. Nothing else did it for me. And I make sure when I burp my bag, I don't breathe. Sandy B...
I got 2 pair of jeans, denim and khaki from soft surroundings.com. Do a search for denim stretch leggin on the site. They look and feel exactly like jeans. They have a flared leg, and elastic in the...
Hi Carrie, I too, have fevers when I'm about to experience a Chronic Ebstein Virus flare. Before the virus becomes Chronic, I started with mini-flares that you described. I would ask the dr. to check...
Hi, I have CEBV and test high when I'm going thru a flare. Once you have EBV, you always have it. Once you titer levels get very high after awhile, it becomes Chronic Ebstein Barr Virus. You have all...
I too take 100 ml. of trazadone at night for sleep and have been for 10 years. It helps better if you take it regularly. I take mine 45 min. before bedtime and don't remember anything after my head...
CEBV is gotten from mono antibodies (after having mono years and years ago) after your autoimmune system has a setback (my accident 11 yrs ago) and you are older. I've got fibromialgia also. So the...
I would sugest you see an ET nurse to make sure your stoma is located properly. You don't want it at your waist of because wearing clothes. Ask your dr. for a consult. You will be talking to an ET...
Thank you both for the welcome. Yes, I live in Seminole (St. Pete), Fl. Where are you located?...
Before I had my ileostomy they did the marker test and after 1 wk. I hadn't passed any. I also had the barium test and didn't past that either. within 3 mo. I had surgery. Sandy B. I'm possible...
I had my first ileostomy 2-05. It was bungled and my colon was left in along with my retum. Also, a loop ileostomy that was left open to my colon, caused it to fill up and became a toxic megacolon....
I finally found the Hollister New Image convex bag a year ago, and I've had great results with it. I too, use an Eakin Seal ( and powder if I am red and sore). Here in Fl. in the summertime, I change...
I can eat Mexican food and other favorites without getting sick. Sandy B...
I can eat a lot of different foods that used to make me sick....
I lost weight after my ileostomy, over 2 yrs. ago, then I went back to my normal weight by the 1st yr. and have stayed there ever since. Sandy B...