Introduction - It's Simple, I'm Complicated.
I'm finally going to start doing this, usually late at night.
Many doctors have told me I should write a book about my life, the multiple medical conditions I have, and all the stuff that has happened in and out of hospitals. But I am not the type to talk about myself or dwell on my situation.
Having also seen a psychiatrist for years now, maybe I can do it in this Blarg (like a blog but more random) format. It was his idea too. Excuse me while I visualize you not reading this.
To say, "Things are complicated," is an understatement. The ostomy surgery was a last chance thing to avoid dialysis. My kidneys weren't coping, and I was living on blood transfusions and heading for sepsis again. That was about 10 years ago, and I am still not on dialysis (so far), though I do have chronic glomerular necrosis, stage 2 kidney disease. I got that partly because I had the last of my bladder removed in my early teens as well as some kidney and whatever else. Before then, doctors tried to renovate my plumbing as a child, after being born with my insides down there, on the outside. It didn't help I was born in the sixties in a small town in southern Alberta. A time and place far from here, medically speaking. From what I have been able to find out, my congenital defects were likely due to a hormonal imbalance in the womb. I really don't know exactly how many surgeries (over 20, two last year) I've had, or how much time I've spent in hospital (added up a couple of years at least). This will be the first time I ever tried to document what happened.
Getting a urostomy, ileal conduit, a thing I hate but saved my life (again), to me was not no big deal, but I have been through much worse. This we have in common, but I've yet to meet anyone else born with the same condition(s) as me that led to all this mess.
Hi Dave,
I just wanted to let you know I enjoyed reading this and your interesting profile. I have a close friend of many years who also had her bladder removed and she now has an internal reservoir. Like you, I think hers was a congenital issue. We've been friends for 25 years, but the funny thing is we rarely talk about our ostomies. We met because of them, but our ostomies don't define us, I suppose. Good luck to you, and I hope you enjoy the stories, revelations, and advice of all the wonderful people on this site.
PJT
MeetAnOstoMate is a remarkable community of 41,407 members.
“I mostly read and still feel like I belong.”
“Doctors took notes; they want others to find this website.”
“From midnight blowouts to big wins, there’s always a hand to hold.”
I’d like to write a nice review
that might express something quite new.
Then I read previous points of view,
which said the things I wanted to.
I would endorse the things I’ve read
about what other folks have said,
for these are the benefits and things
that joining a site like this can bring.
When I was an initiate, (novice)
it seemed to be appropriate
to express myself in rhyme
as this is how I spend my time.
When contemplating what to write
with contributing to this site,
it seemed to me, my ostomy
could be expressed in poetry.
Thus, when I had something to say,
a rhyme, for me seemed the best way,
for rhymes can often capture stuff
that prose don’t capture quite enough.
I do appreciate the way,
this site lets people have their say
in whatever mode they will
about the things that make them ill.
There are not many forums for
discussing stuff most folks abhor.
So, this site fulfils a small niche,
where angst and problems can unleash.
Where raw emotions can decant,
so, folks feel free to have a rant,
and we can all associate
is something I appreciate.
B. Withers 2021
WOW... Beautifully written for sure, Dave.
I appreciate the difficulty you've endured and admit I've never known anyone with your described congenital malformation. The fact that you have overcome such adversity since birth is to be admired. I agree with your doctor, you should write a book! What an inspiration you are. Certainly puts my history in perspective.
Thank you for sharing your story. I realize that it wasn't easy for you. It takes a lot of courage to trust your personal life with strangers. I hope this site proves to be a place where you'll feel safe to continue to share. At the very least, just know that you're not alone.
Continue to take care of yourself. You are a miracle.
BEG
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