Life After Major Surgery: Adjusting to a New Normal

Hello everyone, this is my first post, but I've been reading for quite some time 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 an autoimmune disease, as I also have fibromyalgia, oh such fun. In short, it's where the body attacks the cells of the colon and replaces them with collagen, scar tissue, with that, no allowance for fluids to be reabsorbed 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 bedridden, having to go to the bathroom more than 20 times a day. The pain was excruciating, and my belly swollen like I was due to deliver. Rejected by a number of GIs after a gambit of nasty tests, deemed untreatable, the Head Surgeon refused to help me after a lack of knowledge and experience, even after discussing with his colleagues. Finally found a doctor who was willing to help me, literally saved my life as I was dying. The result was a total proctectomy, 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, ConvaTec 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 equals sugar. As of late, the fibromyalgia is through the roof, and I await 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! "Lots 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.

Hi newI

Couldn't you just punch those who says "lots of people have bags"? I know I could sometimes. I came close with a nurse at the hospital who made having a stoma seem like it would all be sunshine and rainbows.

It's really difficult when people make light of it, as if, it's supposed to make you feel better. We are ALL trying to feel better and adjust but don't make it seem so easy, because it's not! Thank you for understanding.

Hi newl, thanks for sharing.  There's a ton of us who understand.  Many, like "hiding", had similar experiences.  Sometimes we forget that along with the radical surgeries, the new appliances and all the crap that goes with getting used to our new selves, most of us get anxiety, some depression, maybe PTSD and downright angry at times.  Though I strongly believe that most people mean well, our situations are too difficult for many of them to understand and their responses are insensitive.  Meaning well and putting forth the energy to really help can be worlds apart.  

Stick with us.  We really do help each other and feel rewarded when we succeed.  

Respectfully,

Mike