Thanks for the suggestions and support. My struggle has gone on
for 20 plus years, and I only received the correct CI diagnosis (had to
diagnose myself, first, then went to Mayo to confirm it) a little more
than 2 years ago. I can't thank you enough for being so candid and
informational. I've read much of what you and others have written on the forum,
and everyone seems to be such great and reliable resources. Sure wish the docs
knew to refer patients to this site, as I think it could ease a lot of
anxieties, just knowing first hand that real people are out there
with a similar perspective on this disease or similar ones. We are the ones
living through it all day-to-day, after all!!!
Question: My doc has said nothing about the disease progressing; she just
explained to me, after testing, that my involvement is specifically the colon, and that
a subtotal colectomy with ileo-rectal anamostosis would cure it. She said
that people live quality lives without their colons, etc. The surgeon is a little
more cautious, even urging me to avoid the surgery as long as possible, even
though he is supposedly one of the best at Mayo. So, you see...my quandry...
To try to avoid surgery as long as possible, but do I then risk additional damage
to other areas of my GI? This was never presented to me as a possibility, but I'm
hearing on the site that some people wished they had their colectomy sooner than
later, due to additional disease-- almost like the disease spread to the small bowel
over time? Or just go ahead and have the surgery (risks and all) and increase the quality of my
life pretty dramatically, give or take a few weeks or months of adjustments. I've
already endured years of "adjustments" to a very abnormal colon, so adjusting over
time after surgery seems very do-able. (Like many on this site, the disease has weakened me
physically at times, but it has strengthened my endurance, psychologically in many ways, too).
Plus, it is very likely I will feel and function so much better afterward...
wow, that would be amazing!
I know you aren't a gastroenterologist, so I'm not asking you to diagnose or write
my treatment plan ! I'm just looking for knowledgable opinions and experiences.
Others are encouraged to chime in, too. Ultimately I'm making the decision, but I
need other opinions than from doctors who aren't living with all the day-to-day
difficulties/pain/social embarrassment/frustration we all face (or faced at one time).
(Also, even though I don't know Lizzy, my heart is going out to that woman, having
read about her on the posts. Everyone on the site has done such a marvelous job of supporting
and helping her. Another wonderful outcome of the forum. Kudos!)