Hello all, I read your stories with great concern, tis so sad to learn of all the situations however somewhat unusually heartening.
Fortunately for me I am not a sufferer however my brother is. The specialist we see in Australia talk about his case as the most severe they have ever seen however I remain hopeful that this is not the worse case ever and that people with worse cases have found ways to live with such a horrible disease (hopefully happily).
Thus my question....
I would need to re-read my notes to explain in depth but the moral of the story is that my brother was diagnosed about 10 years ago. The first few years were hell, in and out of surgeries, various medications, intense pain etc. eventually the bowel and intestines were so deteriorated they had to come out before they ruptured (just in time it seems) the result the bag. At this stage it was hopeful of a reversal, even though very little of the intestine remained. but further abcesses etc put an end to that. the disease had moved into the flesh and was now eating everything in site leaving big gaping wounds that just would not heal. It was surgery after surgery and there wasnt any material left to join together! Eventually the anus had to be removed and the hole that was left has never really healed and full sexual function was destroyed (8yrs later) there is a thin layer of skin that forms but breaks open regularly and takes many months to close again. The flare ups are common and the blockages are constant and agonising. There are gall stones to deal with almost hourly and the depression is relentless.
This in itself is aweful, however in addition during one of the surgeries there was a servere reaction to the anethetic the result being a violant fit that broke his shoulders and back in several places. He can still walk, luckily, but the damage caused results in ridiculous ongoing pain and lack of movement in many joints. He also feels that he was awake during the major surgery and experiences great nightmares. There is no money, no real gvt support and work is all but impossible. For him life is a burdon of which he wishes he did not have to take part.
I write as I feel hopeless to help, I try to encourage him to see the bright side but all this does annoy him and makes him feel less understood. I know he no longer wants to live this life and feels he has been hugely mistreated.
Are there people out there that have shared in such extreme circumstances? I know that he is always happy to hear of people success with this disease but finds that many of the things that work for others do not work for him making him feel even more alone. I hope that if I make contact and encourage him to join he may find hope in the inspirational stories I read on here. Or even if there were someone he could talk to online in the deap dark hours of the night when no-one else can share his pain.
Any advice or help would be appreciated.
Fortunately for me I am not a sufferer however my brother is. The specialist we see in Australia talk about his case as the most severe they have ever seen however I remain hopeful that this is not the worse case ever and that people with worse cases have found ways to live with such a horrible disease (hopefully happily).
Thus my question....
I would need to re-read my notes to explain in depth but the moral of the story is that my brother was diagnosed about 10 years ago. The first few years were hell, in and out of surgeries, various medications, intense pain etc. eventually the bowel and intestines were so deteriorated they had to come out before they ruptured (just in time it seems) the result the bag. At this stage it was hopeful of a reversal, even though very little of the intestine remained. but further abcesses etc put an end to that. the disease had moved into the flesh and was now eating everything in site leaving big gaping wounds that just would not heal. It was surgery after surgery and there wasnt any material left to join together! Eventually the anus had to be removed and the hole that was left has never really healed and full sexual function was destroyed (8yrs later) there is a thin layer of skin that forms but breaks open regularly and takes many months to close again. The flare ups are common and the blockages are constant and agonising. There are gall stones to deal with almost hourly and the depression is relentless.
This in itself is aweful, however in addition during one of the surgeries there was a servere reaction to the anethetic the result being a violant fit that broke his shoulders and back in several places. He can still walk, luckily, but the damage caused results in ridiculous ongoing pain and lack of movement in many joints. He also feels that he was awake during the major surgery and experiences great nightmares. There is no money, no real gvt support and work is all but impossible. For him life is a burdon of which he wishes he did not have to take part.
I write as I feel hopeless to help, I try to encourage him to see the bright side but all this does annoy him and makes him feel less understood. I know he no longer wants to live this life and feels he has been hugely mistreated.
Are there people out there that have shared in such extreme circumstances? I know that he is always happy to hear of people success with this disease but finds that many of the things that work for others do not work for him making him feel even more alone. I hope that if I make contact and encourage him to join he may find hope in the inspirational stories I read on here. Or even if there were someone he could talk to online in the deap dark hours of the night when no-one else can share his pain.
Any advice or help would be appreciated.
, Kelly has an ileostomy and Pyoderma Grangenosum. Here is a link to one of her threads in the Stoma Subforum...................
