[Chirley]

Hello Birgitta,

I can understand people who can no longer tolerate the itching and make a decision to suicide. Luckily, I still have some nights when the itching is not such a problem and I can get the occassional good nights sleep. On the bad nights, I quite often think that I am almost at the stage when I can't take it any more.

As for the surgery. Although I have had numerous tests, including gastroscopies (about 12 of them) pill cams (3 of them) balloon enteroscopy
(1) colonoscopies (about 8) they still don't know where the bleeding is coming from. Faecal occult blood is positive but why? The assumption is that it's small bowel but that is a guess. My doctor wanted to do an angiogram where they inject an isotope. I don't know what the test is called and how it's performed but I refused on the basis that if it's my small bowel that's the problem, then I wouldn't agree to any surgery anyway. The GI bleeding is a blessing in disguise because I don't get iron overload from the transfusions which I would still require because of the marrow problem. Also, I have a fear of abdominal surgery since one of my friends died many years ago after having small bowel surgery. She died an awful death in pain and vomiting faeces despite having a naso gastric tube in to drain the bowel.

I have also been told that it may be that the Barretts oesophagus that I have may be slowly leaking blood as well although it has never been seen on gastroscopy.

All in all, I have had enough of the investigations without any answers and refuse to have any further investigations unless there is some clinical change.

I'm not usually obstructive when it comes to my health but enough is enough.

I had better go, my little dog just started chasing my chickens. If I don't rescue her, the chickens will start pecking her.

Chirley