Reply To: Frustration

Ok, trying to answer all the questions here, she is on medicaid, there has been no issue of ivig treatment before until now, second time out of the last three there has been issue and they can’t seem to explain what is going on. Now she is going to go about a month without the treatment, she is also on heavy doses of prednisone which has pushed her into a diabetic state also.

Her fistula is located if i remember correctly between her colon and vaginal area. So when she has a bowl movement it actually pushes some amounts of fecal matter into the wrong area. It is very painful the only option they have given her is a colostomy bag, which she doesn’t want to do unless it is reversible so maybe they can fix the fistula and things can be put back to normal later. However, the surgeon they sent her too, will not do a reversible one and even tho she has asked them to schedule her second opinion they have not done so as of yet. She does not have a catheter but because of the bacteria that gets in the wrong area keeps developing Urinary track infections.

They do have physical therapy at the facility along with what they call occupational therapy, which is basically cleaning yourself and being able to do things on your own. The range of motion exercises they tell me the aides are suppose to do with her but they say they don’t do that, physical therapy won’t send up someone to do them with her.