Hi, again, Sol, Today I had my visit with the surgeon recommended by my
gastroenterologist. This surgeon only does surgery on the colon and rectum.
He wants to do more exploring of what else may be causing the one sided
pain in the right side of my upper and lower abdomen , as well as my
constipation, which is growing steadily worse and harder to deal with. He
plans to start with a CT scan and some more blood work, also more thyroid
investigation about the possible (I think probable) hypothyroid problem. He
has been the first doctor I have seen who is willing to even consider the
thyroid question. The others just say, well you've had the 'TSH test and
that's enough. They don't want to listen to what Jodi has suggested in her
posts. This doctor also wants to set up a routine for me to follow that may
be worked with so as to tailor to my needs. The others just throw this
medicine or that one at my problems, most of which aggravate either the
upper problem or the lower one. I must say, I have come away hopeful that
there may be a way out of this besides surgery. We may still end up with a
surgical approach to my situation, but he did, as you suggested so wisely,
give me a worst case scenario of the possible outcomes of the bowel surgery.
I was aware to some extent of many of the outcomes he spoke of, but have
been told that there are no medicines out there that will help my problems,
so I have felt that they stem from my peculiar anatomy. He looked at the
X-rays and still felt that he can help me without surgery. It is worth a
try, even though he will use medicines. I plan to write to him concerning
the things that have been suggested here . We rean out of time today. Once
I am using his plan, I am to contact him every two weeks or so by phone to
check on progress or lack of it. I am not real sure about this plan thing,
but am very glad he is will ing to explore other possibilities within my
digestive tract besides the colon itself. Ruth
From Ruth Strackbein
From: sol <[email protected]>
Reply-To: [email protected]
To: [email protected]
Subject: Re: CS>Sore throat
Date: Wed, 23 May 2007 09:56:49 -0600
Hello Ruth,
I am going to try to start noticing if CS gives me more of a dry mouth
feeling. I've never noticed it doing so, but then I am so very dry I've
even been told I have Sjogren's Syndrome. My eyes get so dry I've had
keratitis, am at high risk of corneal ulcers, and always have some of what
the eye doc calls "dry spots" on my corneas which would quickly turn into
keratitis again if I get careless about my eye drops. I drink liquids
continuously all day everyday, if I don't I just can't stand the dry
mouth/throat, which makes me sort of feel like I'm going to choke.
Yes, I've had IBS, spastic colon, (whatever the latest name for it is--its
all the same thing to me) for over 30 years. But I don't have anything like
the problems you have, at least nothing like that has ever showed up in any
imaging studies. What I had was constant diarrhea, which is also very life
limiting. You can't go much of anywhere when you might have sudden
explosive diarrhea without warning. In my case a very low carb diet almost
cures it. I say 'almost' because I still eat too much carbs (mostly bread
and other grain products) at times, because I've never lost my cravings for
them. I'm finding that grains, particularly wheat are major triggers for
me. Though I don't believe I have celiac maybe there are varying degrees
even of gluten sensitivity.
If you won't have to have a colostomy, in your place I would probably go
for the surgery. I hate to say that, as I myself have had enough surgery to
last me several lifetimes, and have determined not to have any more, but
then I'm not suffering like you are. Not all surgery is bad, and it sounds
like the surgery you are contemplating might help a great deal.
But.....have you asked what your bowel function will be like after the
surgery has healed? Will you just change to constant diarrhea? My only real
advice other than drinking 2 liters of CS per day, is to be sure you get
the real, unvarnished, total truth about the possible consequences (good
and bad)of the surgery. Doctors and surgeons seem to like to give only the
best prognosis, not the worst or mid-case ones. Once I went for an in
office surgical procedure, which I was told was no big deal. I read the
last permission I had to sign, and got up and left without having the
procedure. The possible adverse effects of the procedure were no joke and
were much worse than the condition the docs wanted to cut on me for. Not to
be scary about it, but my advice is to be sure you really understand the
worst case possibilities. I have chosen to have surgeries when I felt the
risks were truly worth it. This sounds to me like where you are at with
your condition. As I said, in your place, I'd probably go for the surgery.
My mother was told that after her colostomy surgery (rectal cancer) she
would never be constipated again, but that turned out not to be true. Might
have been because she refused to follow the diet recommendations they gave
her (no popcorn is the only thing I recall from her list), and she refused
to drink enough water as it was hard for her to get around to get to the
bathroom and since she had become somewhat incontinent and also refused to
wear protective panty things, she handled it by simply not drinking. She
ended up in the ER a few times with severe illness from dehydration.
Because the surgery she had removed all of the part of the colon that helps
neutralize and de-odorize feces, her output was godawful for stench. I
literally could not bear it at times. Plus she had a lot of gas so
sometimes her colostomy bag would actually "blow off" its attachment. The
fecal matter from higher up in the intestines is also extremely acidic (I
guess) because it burns skin, too, in addition to its other attributes.
A lot of that may have just been my mother, as I have a little old lady
friend now who has a colostomy who does not suffer the stinks etc that my
mother did, nor does my friend become constipated, etc. Or maybe it is
because of what portion of the bowel was removed, I don't know enough to
know. My little friend (now 92) had the colostomy because she had suffered
a total bowel blockage with bowel death, and was found unconscious in her
apartment, near death. They were going to reverse it at some point, but
because of her age at the time (late 80s) the doctor told her she might not
survive the second operation.
Is there any chance you could go into the surgery expecting the bowel to be
attached to the rectum and still come out with a colostomy? If there is any
chance of that, be sure that is a consequence you can accept.
sorry not to have more to offer,
sol
ruth strackbein wrote:
Hi, Sol, I am not using DMSO and get this peculiar feeling in my mouth and
throat every time I use CS. I do have dry mouth this morning, but am
scheduled for a nuclear stress test of my heart at noon today to see if my
heart is okay for a possible partial removal of my large bowel. This bowel
is a great deal longer than normal and the X-ray series show that it is
sort of twisted back on itself, transverse colon hangs way low, the upper
"corner" that usually looks to be higher in the abdomen than the other
"curve" is doubled back on itself. It has showed up that way back in the
late 70's, too. The extra long colon was first detected in 1954 when alot
more contrast medium was required to complete an x-ray. At present I seem
only to be able to pass stool by using an enema and/or stool softener or
dulcomax (spelling?) . And I have severe burning almost all the time in
the right side of my abdomen. I do not use the bowel medicines every day.
Usually a two -three cup plain warm water enema. If my whole abdomen felt
as good as my left side, I would be just fine! Have recently had a transit
time, food residue can take as long as 7-8 days to exit my body.
Recommendation is to remove about 90% of my large colon and hitch the rest
to my rectum. I am contemplating having this done by a surgeon who
specializes in colon, rectal surgery and does no other kind. I have tried
various alternative therapies without success, have added some of the
suggested nutrition changes like garlic caps for inulin, etc. that have
been suggested on eskimo. Trouble is, I feel I can't try all of the
suggestions at once. Finally I have to have money left for food, itself.
There are some food groups I can't tolerate. Am lactose intolerant, Don't
get along with the cabbage family, potato-tomato family, citrus fruits.
Actually it is very hard to figure out what to have to eat. Even my
chiropractor says that there comes a time when the regular Docs and the
Surgeons need to be called in. Also I have lost a great deal of weight
over the past year or so. From around 130 to 120 to yesterday's weight of
111 since 2005-2006. I know from your posts that you have alot of eating
troubles, too. Would value your opinion of all this. Ruth at
[email protected]
From Ruth Strackbein
From: sol <[email protected]>
Reply-To: [email protected]
To: [email protected]
Subject: Re: CS>Sore throat
Date: Tue, 22 May 2007 20:47:45 -0600
I only get the dry mouth/throat if I'm using CS/DMSO orally.
sol
ruth strackbein wrote:
Hi, Jason, I don't exactly get a sore throat, but it does feel dry in a
strange sort of way, don't know just how to describe it. It isn't like
being thirsty, either. Ruth I tend not to use CS as much on this
account.
--
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