New to CD...HELP!
Shelly2ww
Diagnosed at 40 a year ago following being struck down by a long list of
problems...a heart blockage opened (no history of heart disease), then
pancreatitis
which was followed by adult onset diabetes in same month with Crohn's
disease to follow the next month, a grapefruit sized tumor on my ovary
last summer only to be followed up with a suspicious lump on my thyroid
that is being evaluated as I type this.
Regarding the Crohn's...none of the treatments have gotten it into
remission yet. The heart and diabetes, I was able to get straightened out
through loads of hard work, weight loss, exercise, meds, etc. but nothing
I can do seems to put this CD thing at rest. Bleeding, pain, pain,
bleeding, urgencies like I have never imagined with frightening effects.
I can go on and on but my guess is you all know exactly what I am
referring to. Not something that is comfortable to talk to others about
just because of the nature of the disease. Thank goodness my GI Dr. (who
I adore) told me about this space.
My plate is overly full, so to speak, and I must say that I have a
wonderful team of specialists working to help me. But, none of them have
CD and can really know what it's like. This started out as a "mild" form.
I cry for anyone who has it worse...I can't imagine life any worse. My
Dad had a colonostomy 30 years ago when no one discussed things like that.
He was a trooper. Like I said, I'm reaching my ropes end. With no
treatment yet to help, this weekend began yet a new one. I've been thru
and in some cases still are taking combinations of:
Pentasa, Rowasa (suppos & enima), Levbid, Flagyl, and now Prednisone. The
steriod treatment was one we have been avoiding due to my diabetes. Yes,
it is already playing havoc with my glucose numbers and I will most likely
have to resume insulin shots any day. (I worked so hard to get off the
shots and am very depressed at the hought of resuming.)
Anyhow, that's my life story (or at least the part from the past 1-1/2
years). My profession is a very high stress one with a lot of
responsibility. I have, believe it or not, missed any work days due to
the CD with the exception of the days I was hospitalized for tests
(colonoscopy, ERCP, GI's bloodwork, Cat Scans, etc, etc.)
Thank you in advance to all who respond with advise, ideas, suggestions
and support!
Shelly
Leon Milberg
Shelly:
Yes I have a suggestion. There is a new protocol using Azathioprine
(Immuran) that uses large doses IV infused. This has been found very
effective. There are currently trials going on that show 1-2 weeks to
remission. Lower oral doses can maintain the remission. Talk to your
GI about it. If he/she is current he/she will know about it. Oral
Immuran can take up to 6 months to work.
There is one contraindication that requires testing for a protein. If
you have this protein you cannot get the infusions.
The dosage for maintenance is low and will not interfere with your
other meds. It's WAAAAY better than prednisone.
Leon Milberg lmil...@earthlink.net
Barbara Mills
Shelly2ww <shel...@aol.com> wrote in article
<19970407021...@ladder01.news.aol.com>...
> My profession is a very high stress one with a lot of
> responsibility. I have, believe it or not, missed any work days due to
> the CD with the exception of the days I was hospitalized for tests
> (colonoscopy, ERCP, GI's bloodwork, Cat Scans, etc, etc.)
>
> Thank you in advance to all who respond with advise, ideas, suggestions
> and support!
> Shelly
>
>
>
Shelly,
Take a close look at your stress levels when you are trying to heal
yourself physically. It may not be a stress induced disease (CD) but it may
well be a stress related disease.
Best Wishes,
Barb Mills