Hello everyone, this is my first post but I've been reading for quite sometime now. It will be a year in March since I had my surgery. I had a rare progressive type of collagenous colitis and had been suffering since 2005. Apparently due to auto-immune disease, as I also have fibromyalgia, oh such fun. In short, it's where the body attacks the cells of the colon and replaces it with collegen, scar tissue, with that, no allowance for fluids to be reabsorb into the body as does in the colon so it all comes rushing out. It's microscopic and only detected during biopsies.
I was pretty much bed ridden, with having to go the bathroom more than 20 times a day. The pain was excrutiating and my belly swollen like I was due to deliver. Rejected by a number of GI's after a gambit of nasty tests, deemed untreatable, Head Surgeon refused to help me after lack of knowledge and experience even after discussing with his collegues. Finally found a doctor who was willing to help me, literally save my life as I was dying. The result was a total protectomy, permanent ileostomy. I was in the hospital first for PICC line nutrition as they felt I was not strong enough to recover from such a radical surgery. Many complications followed in the hospital, then once home the battle was to find the right appliance. The concern was whether or not it had attacked the small bowel. Yikes!
But, relieved from the years of pain, now adjusting to a new bag of life.
I found an appliance that at least won't blow out of me when least expected so that's a relief, Convetec high output with convex wafer. It has a spout on the end, and further secured with a clasp. I've been struggling with trial and error with foods, scary as I don't want to end up back in the hospital. I've gained weight because most of the foods are in the "white" category, starchy=sugar. As of late the fibromyalgia is through the roof and await for better days ahead. I'm afraid I've become isolated and the longer I stay inside the harder it will be. I am a single widow, considered attractive, full of life, funny and all that, but I certainly don't feel "me" anymore. I don't even know who she is. After just getting my kids off toward their own life, now time for me to perhaps find a man to enjoy the rest of my life with, I was struck with this. I feel I will have to succumb to the fact that I will be alone forever.
My family did not tolerate my surgery very well. I've always been the strong one in the family and looking after everyone aside from my job as a visiting nurse. Now with me struggling, they seem to avoid me. Treat it as if it's no big deal! "lot's of people have bags" Oh yeah try saying let's see you get your entire bottom end ripped out, sewn zipped up and tear your belly open to remove your stuff and leave you with carrying a bag of feces as an accessory.
Somedays, I'd just like a day off. A day I don't have to deal with it, look at it, cope. So instead, I keep to myself as no one seems to understand.
I was pretty much bed ridden, with having to go the bathroom more than 20 times a day. The pain was excrutiating and my belly swollen like I was due to deliver. Rejected by a number of GI's after a gambit of nasty tests, deemed untreatable, Head Surgeon refused to help me after lack of knowledge and experience even after discussing with his collegues. Finally found a doctor who was willing to help me, literally save my life as I was dying. The result was a total protectomy, permanent ileostomy. I was in the hospital first for PICC line nutrition as they felt I was not strong enough to recover from such a radical surgery. Many complications followed in the hospital, then once home the battle was to find the right appliance. The concern was whether or not it had attacked the small bowel. Yikes!
But, relieved from the years of pain, now adjusting to a new bag of life.
I found an appliance that at least won't blow out of me when least expected so that's a relief, Convetec high output with convex wafer. It has a spout on the end, and further secured with a clasp. I've been struggling with trial and error with foods, scary as I don't want to end up back in the hospital. I've gained weight because most of the foods are in the "white" category, starchy=sugar. As of late the fibromyalgia is through the roof and await for better days ahead. I'm afraid I've become isolated and the longer I stay inside the harder it will be. I am a single widow, considered attractive, full of life, funny and all that, but I certainly don't feel "me" anymore. I don't even know who she is. After just getting my kids off toward their own life, now time for me to perhaps find a man to enjoy the rest of my life with, I was struck with this. I feel I will have to succumb to the fact that I will be alone forever.
My family did not tolerate my surgery very well. I've always been the strong one in the family and looking after everyone aside from my job as a visiting nurse. Now with me struggling, they seem to avoid me. Treat it as if it's no big deal! "lot's of people have bags" Oh yeah try saying let's see you get your entire bottom end ripped out, sewn zipped up and tear your belly open to remove your stuff and leave you with carrying a bag of feces as an accessory.
Somedays, I'd just like a day off. A day I don't have to deal with it, look at it, cope. So instead, I keep to myself as no one seems to understand.
