NO PLACE FOR COMPLACENCY

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Bill
Nov 22, 2021 7:29 am
What a nightmare! So, I thought Id' share.

Best wishes

Bill

NO PLACE FOR COMPLACENCY.

For years I’ve sussed this stoma game,
and until now I think I’d claim
that I have got control of it
and little bothers me with **it.

Every problem that I’ve had,
has never really seemed too bad,
because I’ve solved it rapidly
and moved along quite happily.

In stoma life, there’s always been
some rituals, governed by routine,
which helped me overcome the strife
that otherwise might blight my life.

These rituals and routines are there
for me and other folks to share,
so we can live to be contented
and not have problems we lamented.

If living with a stoma, we
succumb to some complacency,
then we expect occasionally
it’ll end with a catastrophe.

A recent example of this,
where even I have come amiss,
was when my irrigation sleeve
got so full you’d not believe.

So, nonchalantly, I began
to make my way towards the pan
to flush away that human waste,
but did so, in far too much haste.

The two piece sleeve became detached,
and without warning it dispatched
its load all over everywhere
and left me standing in despair.

So, I thought I ought to share
this story so you are aware.

                                 B. Withers 2021

lovely
Nov 22, 2021 10:21 pm

Sorry that happened to you, Bill. You must have been very frustrated.

Bill
Nov 23, 2021 6:59 am
Hello Lovely.
Thank you for your kind thoughts. As they say --- These things are sent to try us!
The problem has been brewing for some time now, as my irrigation routine has not been working as it used to. I discussed it with the stoma nurse yesterday and she tried to explain how the bowel collapses on itself (squishes-up was how she described it)and blocks the outlet. The waste builds up behind the blockage and then is released all at once ( if you are 'lucky').
Unfortunately, she also thinks that I should stop irrigating, lest I get a ruptured bowel. The thought of having to stop irrigating (and going back to using bags)is much more disturbing than an occasional blowout. Hence, I am going to have to ponder on this one for a bit longer and perhaps try some different routines.
Best wishes
Bill
Posted by: ejbetty

Geekyjen,

Thanks for the reply.  I will be seeing my doctor on Friday and mention Entyvio.  I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared.  The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade.  Turns out I have been diagnosed with LUPUS. It is attacking my nervous system.  I had ulcerative colitis in 1996 and they had to remove my colon.  Had a J pouch for 10 years, until it started failing.  I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently.  I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared.  I have had two hospital stays now because of the blisters and the paralyzing incident.  I will be dealing with this forever now.  I have just been working on acceptance.

I love this website because of wonderful people like you!

 

Betty

lovely
Nov 24, 2021 6:04 am
I know you have always been happy with being able to irrigate. Hope you can get things worked out, Best wishes