I've found a little pearl #2

[Ruth]

I wanted to post this under my original message but the discussion has
been closed and will only let me reply directly to the authors of the
previous messages (Pologirl and myself), so I have opened a new
thread.


Hi Pologirl ☺ Hi All ☺

I’m really sorry for not replying earlier. I guess I was just
stalling, and in some way just pretending to myself that not talking
about it would make the decision making disappear.

There was no decision made in March because the Professor S wanted
better pain and nerve management before making a final decision about
which operation/s to choose.

So I went back to the pain clinic (also in Marseilles, at the Timone
hospital), and was shown how to use my TENS unit better.

http://en.wikipedia.org/wiki/Transcutaneous_Electrical_Nerve_Stimulator

I have to wear it all of the waken day, and remove it only to shower
or to sleep, but it is a real hassle with clothing, I need help fixing
the electrodes and passing the cables. I suppose I will end up
getting used to it in a while.

My oral pain treatment, a cocktail of pregabalin (Lyrica) and
amitriptyline (Laroxyl) is still difficult to get used to as it makes
me hyperactive and insomniac. I feel completely “zonked” most of the
day and suffer from slurred speech and blurred vision

http://en.wikipedia.org/wiki/Pregabalin

http://en.wikipedia.org/wiki/Amitriptyline

I’m not having much luck with most of the other treatments I’m on
either. The oxybutinin (for urinary incontinence) is leading to a
gradual destruction of my dental tissue and six of my teeth have
broken outright since I have been taking the molecule.

http://en.wikipedia.org/wiki/Oxybutinin

The folic acid treatment (for my vitamin B9 deficiency) doesn’t seem
particularly efficacious; I am still suffering from severe glossitis
(inflammation of the tongue), anxiousness, insomnia… I have decided
of my own volition, to abandon the loperamide (Arestal) that was
prescribed to slow down my digestion but has not made the slightest
difference, my stools being just as inconsistent and watery with or
without it.

Once the pain management questions dealt with, I went back to see the
Professor S on the 24th June.

We have both come to the conclusion that 3 of the alternatives he had
proposed were unworkable (graciloplasty), unadvisable (artificial
sphincter) or unacceptable (status quo). The nerve and muscle damage
resulting from the tumour itself and/or from its ablation, or from the
unfortunate episiotomy, coupled with the quantity of scar tissue in
the whole of the pelvic zone would seem to eliminate both the first
and second of these choices. If a status quo had been an acceptable
alternative, I would not have sought a solution to my problems of
faecal incontinence in the first place.

The Malone's would have been used in conjunction with one or the other
of the two abovementioned operative choices. The Professor S did not
consider it as being likely to ameliorate my situation were it
performed alone as the ruptured sphincters would be unlikely to cope
with a washout.

We have thus decided upon a definitive colostomy that will be
performed by the Professor in a little more than a month’s time, on
the 22nd September, at the Timone Teaching Hospital in Marseilles.

I know I have left things till the last minute to let you all know but
it has been hard coming to terms with it all.

In order to be familiar with the different aspects of life as a
colostomate, I have joined an English language ostomates forum on the
web, “Ostomyland”

http://ostomyland.com/mainsite/

which has a very active, friendly and informative live chat. I have
also joined a French msn grouped for ostomates.

You will never guess who I found on the Ostomyland chat? Zayden’s
mum, Amber!!! (Our very own devilsplaything) I was glad to find a
“familiar face” on there. I am feeling much more serene about it all,
and am even beginning to look forward to the stoma, since everyone on
there has assured me that it will give me back my dignity, my comfort,
my health and wasted mornings.

It has been a very long struggle. 46 long years of medical denial and
negligence. 44 of them in which I had struggled alone. Had we not
created this Teratoma Free Discussion group 18 months ago, I am sure
that I would still not have made the slightest headway. But, no
longer feeling alone and, with your collective help, becoming my own
advocate for my health issues, I seem, finally, oh how finally, to be
receiving a somewhat belated follow up.

Hugs

[Una Smith]

Oh Ruth!

As usual I feel conflicted. Sorry you have to do this but so happy
for you that you are doing it. Admiration of your courage in sharing
this with us!

The idea of a colostomy may be scary and strange but it does seem to
be a good choice for you.

A grandmother in my family had one. She has passed on, from a cause
unrelated to the colostomy, but she lived for some years with the
colostomy and indeed it did provide great dignity and freedom. Some
of the family were opposed to the idea but I supported her choice,
and the improvement it made in her life was enormous. I have been
wanting to say that to you but held off to let you make your choice.

So many drugs... Are they all being prescribed by your Dr. S? Have
you looked into dosaging? I often take smaller doses than what is
recommended, of drugs such as pain relievers, antiinflammatories, and
antihistamines; for me, the smaller dose is just as effective and
has fewer side effects.

Hugs,

Una