Caveat emptor - ostomy cure?

Hello Everyone!
Over the past week or so I have been contemplating the concept of ‘buyer beware’ with regard to those brave (if sometimes gullible) people who offer themselves for clinical trials where surgery is involved. There are so many aspects to this, notwithstanding my deep mistrust of organisations that send people to ‘war’ but don’t take full responsibility to look after them if or when they get injured.
My 6th rhyme on this specific subject was motivated by the TIES experimental clinical trials involving an artificial implant to assist people with iliostomies . Their seemingly’ market-oriented’ website raised so many questions that I feel sure i will address it again in rhyme soon.
However, for now, I thought I would share my thoughts with you
Best wishes
Bill




CAVEAT EMPTOR 6. ( OSTOMY CURES?)


Caveat emptor means ‘beware’,
so in this rhyme I’d like to share
some thoughts about a product where
there might be dangers hiding there.


Some might call me paranoid
when I begin to get annoyed
at some deceitful sales techniques
that lack some balancing critiques.


The label of a ‘stoma-cure’
seems, in itself, to be a lure
to catch those who are vulnerable
and maybe even gullible.


I logged onto an online site
whose title implied that it might
have found a ‘cure’ for ostomy
which raised my curiosity.


It turned out that their implication
of a ‘cure’ was fabrication
included in their publication
to help sales communication.


Their product that was on offer
could not ‘cure’, but I would proffer
was a different type of stoma
thus, their title’s a misnomer.


When once deceit enters the frame,
I start to think they play a game
where profit is the guiding aim,
so, I suspect the things they claim.


As I don’t wish to come amiss
I then dig deeper into this
to find that they boast research cash
will give their sales-pitch more panache.


(continued->)

CAVEAT EMPTOR 6. ( OSTOMY CURES?) (continued->)

This raises my suspicions high
that their main aims will be to try
to ‘sell’ this product for profit
to see how much they make off it.


On their website they display
certificates, that seem to say
that this product is ‘certified’
and safety is therefore implied.


But looking closer, it’s not so,
for these documents just show
that the firm is certified,
not the product, as implied.


When once suspicion is set in
then there’s no doubt that I begin
to scrutinise things they portray
and view them in a sceptic’s way.


To find out what they are about
I look for things that they leave out,
because omissions often show
those hidden things we ought to know.


I’d question how the money’s spent
and more precisely where it went,
for that might indicate a lot
and inform us who got what.


I’d ask about the whole affair
to try to find out if they care
about those patients where they failed
and had their fragile lives derailed.


I’d want to know all they’ve not said
or written, so it can’t be read
I’d like peer-group reviews so we
can have a balanced view to see.


(continued->)

CAVEAT EMPTOR 6. ( OSTOMY CURES?) (continued->)


When publications are not dated,
then, I for one, become frustrated,
because I cannot then decide
if certain things they’ve tried to hide.


I like the concept of reviews
where users can give their own views
of the products that they’ve had
no matter whether good or bad.


When users score from one to five
they help to keep my trust alive,
for as I read scores one and two
it helps me keep a balanced view.


When users views cannot be found
then, I’m afraid that I am bound
to have some feelings come on strong
that something might be badly wrong.


What happened to those guinea-pigs
who first tried out these thingamajigs?
would they still say they’re satisfied
with this gadget that they tried?


Or would they tell a different side,
perhaps of things folk wish to hide
as it might shine a light upon
a cynical, devious, selling con?


I’d like to know when these things fail,
I’d like to hear the victim’s rail
about their own experience
and any inconvenience.


But most of all I think I might
like to join a stoma site,
where ostomates speak openly
about the problems they foresee.

                                                     B. Withers 2022

Another feather in your cap, Bill my friend. The negative consequences are thrown away like yesterday's fishwrap.
I was a very early recipient of the J-Pouch. The pouch rests just about where the internal rectum (minus sphincter) used to be. Just the sphincter is left and it is sutured to one end of the pouch. The idea is that the pouch fills and triggers the sphincter. The entire procedure rests on your sphincter operating as it should. Bad sphincter equals nightmare life!!
The other end of the pouch is connected/sutured to the end of your small intestine (the bit you see of your intestine is the stoma). So now your output comes through the intestines you still have and instead of coming out of your belly, it goes to the pouch (like a stretchy balloon made of your own small intestine). Theoretically, it will just sit there until the pouch volume increases and the sphincter is triggered, telling me to find a toilet right now!!!
The anastomosis at the sphincter gets irritated and infected. The muscles of the resected pouch/small intestine are not strong enough to push and empty the pouch with residual food. I imagine it as a pool with an inlet and an outlet. As your poop goes into the new pouch, the more light and silty material can cause a blockage and the muscles can't squeeze hard enough to eject it. This leads to... pouchitis.... well, yeah, we know it's inflamed. Why is it inflamed??? The million-dollar question is how to stop the utter agony from coming back.
The pain from my mysterious bacteria would have me curled up in a ball, hardly able to breathe. How I described it to the doctors. It felt like someone made a slit in my back and a big hand reached in and was trying to pull all my (remaining guts) abdominal contents out of my ass. It felt like a hand gripped and squeezed my insides in a fist. Some say that as soon as you get pouchitis for the first time, then you are doomed and you're better off having everything removed, pouch and rectum, and sew it shut. My surgeon seemed to work alone and although a seemingly nice guy, I never saw any show of empathy of any kind. The only time I ever saw him smile was when he came to visit me with his wife and their new baby. He had a huge grin. Observing a person in a different persona is so revealing sometimes. So inside, there is a regular guy who is just like any neighbor. I see why they have to and keep all emotions out of it... fair enough!! He had a piece of his nose missing and had a prosthetic attached. Actually, it looked like a bad attempt at concealing; it was very obvious. I mention that because my bro in SF had his whole nose bitten off by a neighbor's collie. The plastic surgeons did a pretty good job. A child was playing with a toy. He threw it and smashed the repair work they had just finished on his nose. He had skin grafts, etc. Nothing could be done... what was left was too delicate to work on. I thought he and my bro had a kind of bond through losing part of their face. Anyway, we both trusted the surgeon. He said he could fix the pouchitis without reversing. A surgeon never wants to admit failure, and I said I would die before I would have an ostomy bag again. I fought hard to keep it. I eventually came back to the bag world and am glad I did it. I would be in his clinic regularly, and all 8 or 10 patients like me would be there. He told me that one of us had a drinking problem and made it clear who the person was. A tiny older lady with a failing J-Pouch who was always in major, major abdominal pain. It was no wonder if she resorted to self-treatment. You try a few things, mix and match your solutions. When you land on the one that takes the pain away, you stick to it, the combinations that actually work and make you feel better. If that thing/solution exists on the planet, you will sniff it out. God help you if that thing is heroin or coke. So begins the self-destruction. There is always a reason back there, in your history, to end yourself, everyone has at least once and maybe twice faced their demons. This lady was simply self-medicating after our surgeon said he was doing as much as he could. She drank more than she should have, was moved to addiction. I tried Vicodin for a long time because the codeine in it slowed my intestinal activity down to about 4 bathroom visits a day instead of 20+. That solution is.
I just wish my surgeon had been upfront from the beginning about the downside and all the surgeries, approximately 20 I've had since the J Pouch was created.
I know now it was an experimental procedure.
I got about 7 good years, and then it was as if my colitis/Crohn's was back worse than ever. I had some nice times over those years and wouldn't give them up, so in the end, I cherish those good years.
Now that the pouch is disconnected and got the ileo, I'm doing ok??

Reconfiguring your dying digestive system is no easy task, so be inquisitive and bring a wing-person to every meeting if possible. After each meeting, explain the technical details that he or she might not fully take in.
Medicine in the US is a disgrace to the doctors and nurses who dedicate their lives to helping others. Medicine has become just another corporate entity where the only job in life is to make profits from their enterprise and for their shareholders. Medicine has to be a non-profit institution.
Eamon??

Hello Magoo.
Thank you for your reply to my blog. I do so agree with you that the medical profession should be non-profit(along with many other aspects of life). However, there are so many making fortunes from other people's misfortunes that I do not think things will change until the law outlaws profiteering.
Best wishes
Bill