Bowel Problems

Is anyone else dealing with the problems associated with having a short
bowel? I was diagnosed with CD long ago (geez, about 20 years now), the
first 10 of which were, as you can imagine, Hell: medsmedsmeds;
TPN/fluid diets (@ home & hospital), and finally a couple major
surgeries that left me with approx. 130 - 150 cm. of small bowel
(thats, what?, about 4.5 to 5 feet). colon was good, although its taken
up some of the slack lately and has some inflammation.

I see my biggest hurdles right now as 1) just getting back in the swing
of 'being sick' (the last 10 years of relative health were spent trying
to get the education<more>, work experience<less>, and a Life that the
first 10 years lacked), 2) readjusting my diet for max. intake/min.
ruffage-related pain &c., 3) dealing with the fact that my provincal
gov't is slashing funding to *every* service anyone could possible
need/use (health, disability benefits, etc, etc).

unfortunately, I'm unable to drink any dietary replacements (ensure,
boost, what have you) as they flow right through me. My weights below
120 lbs., I'm just finishing a course of prednisone that did nothing
but make me aggitated & sweaty, and I'm not excately sure whats coming
next, symptom- or treatment-wise.

If anyone's got *any* suggestions of things to try, or --just as
important-- what to look out for, re: short small bowel problems, I'd
greatly appreciate it.

The biggest thing you can do is slowly introduce things to your diet and keep a log of what it does or doesn't do.

Sometimes something you can react to once the next time you might not so if
you have a problem with certain things stay away from them for a few months
and then try again. Eat small amounts and frequently. My dr told me my
body would adjust in time to the shorter bowel and on the most part it has.
I still get flare ups and have to chill out on everything for a couple days
usually but then my meds seem to help me get back to my normal. Everyone
is different in every phase of this disease. So what works for me may not
for you. You have to find out from your body what it wants and learn to
listen to what it doesn't. Sorry I can't be of more help but that is about
as much as I can say. Stick around though. You have a lot you can share I
am sure with having the disease for so long. I have only know about it for
a few years now.

i have to admit that the individuated nature of IBD (how theres a
number of similar 'symptoms' that affect people in different and
varying ways) is one big double-edged sword. I *want* to find what
works for me (not become simpy another "patient" on the 'assembly'
line) but, when feeling 'shitty' <hehhe>, the very times I need to
figure that out and act, are the times when I feel least like doing
just about anything. <ugh>

the food/activity/etc diary is an excellent idea. I kept one before,
back in '91 (god, I sound like an old prospector, Walter Huston in
trasure of the sierra madres, maybe?), I should see if its stuck in a
box somewhere.

right now the task is to improve my appetite --my ability the last
weeks to eat 1/2 a sandwich & a bowl of soup a day doesn't seem to be
quite cutting it, nutrition-wise ;> -- and research some suppliments
(vitamins/minerals, etc etc).

Well I battle to keep weight too and I have to admit in order to maintain
some weight I mix "empty" calories into my diet. My drs know I do this and
approve of it to keep my weight up in case I have another emergency they
don't want my weight as low as it was with my surgery of 74 pounds. Right
now I am lingering around 105 and they want me to gain at least another 10
pounds because I lose weight real quickly and appetite is so bad that I
don't think a bird would survive! :-) If you can handle things like
milkshakes, ice cream, and pastas help a lot towards helping me at least
maintain what weight I have. (I am 5'1") Before I got sick I was a healthy
126 with a lot of strength. With my weight so low and not wanting to eat
most of the time I find something different to eat that I can snack on.
Like yesterday I had these strawberry filled bakery danish. I had two of
them spread out for snacks and boy they actually tasted good too! So what I
am saying is keep trying all sorts of different things into your diet until
you can get the calories you need to get weight and the nutrition you need
to be as healthy as possible. I am trying real hard to go to natural foods
for my needs rather than another pill. I take enough already! ;)