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Medical Forum / Diseases and Disorders / Arthritis / August 2005

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Whew, a bit of a rough patch!

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Newsgroup Spambuster - 06 Aug 2005 01:41 GMT
Well, it has been a bit of a rough patch these last 2 days.

Got an email this morning from my aunt that my cousin has just been
diagnosed with cancer.   She is only about 50 years old.   So young!
She has a large mass on her upper abdomen and also on her liver.   Thus
far, the doctors prognosis has been quite grim for her.   My aunt
emailed me about it and ask me to let my parents and the rest of my
family know as she just didn't have it in her to tell them.   This is
the same cousins of mine who lost their brother, Mike, to a severe
astthma attack back in 2001.   I don't know what my aunt and uncle will
do if they lose another of their children!   What a heavy weight they
carry!  Uggggh!

In any case, I spent most of last night and today being very ill and
spent a good portion of today at the ER.   Have been passing nothing but
blood for the last 2 days with lots of cramping and pain.   The
diagnosis they gave me in the ER is ulcerative colitis.   Anyone here
ever deal with this at all?   I am hoping to be able to stay home and
out of the hospital, but we'll see.   I was so dehydrated from all the
fluid loss and I have absolutely no desire to drink or eat.   Hopefully
I can push fluids this weekend and hopefully this stuff will settle down
soon!   Am more than likely facing a bunch of testing and a colonoscopy
in my near future, but for now am just wondering if any of you have
dealt with this condition before???

Yuck!   Somebody please stop the rollercoaster.....I want to get off!!!

Hugs to you all!

Donna G
Rosemarie Shiver - 06 Aug 2005 02:13 GMT
Dang, Donna,

   Sorry your cousin has such a bad Dx. And sorry 2 that you had a bout of
colitis. Unfortunately, it does tend to recur. The very best place to know
all about it is alt.support.crohns-colitis where you can ask anything about
it from those who know best. Lots of good ppl. there, Hon.

Hugs from Rosie

--
"If you wanna get it done, you gotta fight for yourself." -- Meat Loaf, Bat
Outta Hell II

> Well, it has been a bit of a rough patch these last 2 days.
>
[quoted text clipped - 26 lines]
>
> Donna G
Gwen Love - 06 Aug 2005 02:29 GMT
Donna, enough already!  You really have been having much more than your
share and I pray it stops very quickly.  Maybe you need to go to hospital to
get this taken care of.  You know we will be praying for you.  So sorry
about your cousin; prayers for all the family.
Gwen

> Well, it has been a bit of a rough patch these last 2 days.
>
[quoted text clipped - 26 lines]
>
> Donna G
Carole - 06 Aug 2005 03:48 GMT
Sending prayers for your cousin and for you, Donna.  My Mom had
ulcerative enteritis, but I don't know what the difference is between
that and what you have.  Did the hospital rehydrate you?  When my Mom
was alive, I used to have to take her to the hospital to be rehydrated
with an IV.  She had a few colonoscopies but they gave her something
that semi knocked her out so she didn't feel anything. It was probably
the same thing I had when I had my heart catheterization. The
anesthetist called it my "happy hour" and I have to admit I felt good :-))))

Carole

> Well, it has been a bit of a rough patch these last 2 days.
>
[quoted text clipped - 26 lines]
>
> Donna G
Brad Clarke - 06 Aug 2005 04:01 GMT
>>In any case, I spent most of last night and today being very ill and
>>spent a good portion of today at the ER.   Have been passing nothing but
>>blood for the last 2 days with lots of cramping and pain.   The
>>diagnosis they gave me in the ER is ulcerative colitis.   Anyone here
>>ever deal with this at all?  

>>Am more than likely facing a bunch of testing and a colonoscopy
>>in my near future, but for now am just wondering if any of you have
>>dealt with this condition before???
The guy I work with has it.

He is on medication for it, and it is under control for the most part.

He had a colonoscopy (which he refers to as the butt-cam), and that's
how it was diagnosed.  He has to go annually now for check-ups.
Sarah L - 06 Aug 2005 06:58 GMT
Now watch it Donna, you are over your limit of bad stuff too.  I want
off the roller-coaster too.  Here, lets go sit in the shade over there.
{{{{{hugs for you and for your family}}}}}

Sarah L.
Harvey R. Stone - 06 Aug 2005 14:11 GMT
> Well, it has been a bit of a rough patch these last 2 days.
>
[quoted text clipped - 26 lines]
>
> Donna G

May God bless you with a time of peace and quiet.  May your doctors do their
best to get this all well.  They deal with this all the time.   I have not.
I think that shaaady spot over there is a good idea and I can just squeeeze
in.  Please let someone else pass the bad news.   Some of you guys move
over.  I want to give my Donna G. a hug....   (((((((hugggg)))))))

Harv
Joan Carter - 06 Aug 2005 16:50 GMT
>May God bless you with a time of peace and quiet.  May your doctors do their
>best to get this all well.  They deal with this all the time.   I have not.
>I think that shaaady spot over there is a good idea and I can just squeeeze
>in.  Please let someone else pass the bad news.   Some of you guys move
>over.  I want to give my Donna G. a hug....   (((((((hugggg)))))))

Sending chocolate for all you shade-sitters. You'll have to eat it quickly so it
doesn't melt. Can you handle that? It is my very best healing chocolate. :-)
---
Joan
Diane - 06 Aug 2005 16:20 GMT
donna, my boyfriend has ulcerative colitis, although they've recently
changed the diagnosis to "crohns colitis". he had it for many many
years, then it went into remission for nearly a decade and came back
this year. you might remember me talking about it on this list. they
couldn't diagnose him at first, misdiagnosed etc. finally was diagnosed
by cat scan. you want to be cautious with colonscopies if you are still
inflamed--they can do damage.

anyhow, they put john on massive doses of prednisone, a drug called
asecol, and a couple of antibiotics specific to UC/crohns. he did much
better on the prednisone. they tapered him off the last five mg too
quickly in my opinion (he started at 60, tapered down 5 mg/week, and
when he got to 5mg, they just stopped him the next week!!!). he flared
and had to go back up to 40mg. this time he's promised to taper off
that last 5mg more slowly. he'll be on the maintenance drug asecol for
the rest of his life. when he stopped it the last time is when he went
out of remission.

you will be amazed to discover how many people have UC (it's
autoimmune, by the way). i have several other friends with it. it
usually strikes young adults, but two of my friends are in their
sixties.

one thing: john was initially misdiagnosed in january as having
c.difficile, an opportunistic infection from having had too many
antibiotics. it's something to consider if you've been on a lot of
antibiotics lately.

also, he lost 20 pounds in under a month. he lived on ensure and
learned to love it, so you might consider that to keep your strength
up. he also ran a constant fever. do you have a fever?

hope this gets under control quickly. please keep us posted.

diane
Kelly - 06 Aug 2005 18:07 GMT
Too much happening Donna.  Sending good thoughts.

My girlfriend had c.difficile from a strong antibiotic Diane.  Wouldn't wish
that on my worst enemy.  She was pretty sick.  The ulcerative colitis is
almost under control for him is it?  Would be nice to have it under control
before the move. Hopefully he has found a good doctor in the new
place.Tapering on prednisone is such a touchy thing but boy what a wonder
drug.

Hope this move goes okay and Donna - please stop the train you are on!  You
need a break.  Will be praying for that.

Kelly
Newsgroup Spambuster - 06 Aug 2005 23:41 GMT
Hi Guys,

Thanks you ALL so very much for your prayers and for your concern.

Just got another email from my aunt and the news is definitely not good.
My cousin saw the doctor yesterday and the cancer is now in her lungs as
well as her liver and upper abdomen.   She was told she has a 1 in 4
chance of surviving this all.   Monday they will do some bloodwork I
guess to see if her body will even tolerate the large doses of chemo
that they would have to give her to try and treat this all.  It is so
sad and sure leaves one feel so helpless as you realize there is nothing
you can do to make this all better.   Many, many prayers are going out
to her and this is our one hope for healing!!!

I am plugging along.   Carole---yes, they did hydrate me when I was at
the hospital and then again yesterday when I was at the doctors office.
Keeping hydrated seems to be the biggest challenge especially when you
have so much cramping and such.   Doesn't make one overly eager to put
anything in their gut at all.  They did put me on an antibiotic as well
and I'm not sure what the next step will be----probably a visit to the
GI docs.   They told me not t eat anything for at least 2-3 days and
told me to drink lots of clear fluids.  Also told me to buy some
gatorade and mix it half and half with water and drink at least one full
glass per hour.   Yuck---I hate the taste of gatorade!  This sure is a
miserable thing and I pray it is not going to become a constant to have
to deal with!   Uggggh.........its also a bit scary to see nothing but
blood!

Harv and Sarah,   thanks.....I will definitely join you under that shade
tree!  Sounds so peaceful and relaxing!!!  Harv, thanks soooooo much for
that heartfelt hug----you'll never know how much that means!
Joan----thanks for sharing your best chocolate!!!  That is so generous
of you!   Harv----I did tell my entire family about my cousin, but they
know I am not feeling all that well, so one of my brothers has taken the
ball now and will notify family of updates and such.   He is also
sending my cousin some flowers from all of us and a care package from us
to let her know we are there with her and pulling for her!  I am
thankful that my brother is taking care of this all and is willing to do
so!

Diane, maybe when you get more settled, you or John could share a bit
more with me about this colitis stuff.  I hope it heals and never comes
back, but my doctors don't seem to think that is going to happen.   Sure
don't want or need another autoimmune disease and especially this type
of thing!    I know, I know, things could be so much worse and I should
quit my complaining!

Thanks Kelly and Gwen for your prayers and encouragement as well.

Lots of hugs to you all and wishes for a lovely weekend for everyone!!!

I gotta go lie down for a bit again.   Phew, I am tired!

Hugs everyone!

Donna G
Diane - 07 Aug 2005 00:52 GMT
donna, what antibiotic are you on?
of course john and i will give you more info when you have a firmer
diagnosis. i know how scary all that blood can be. john was very sick
with the fever etc first, and then he had the cramping and massive
amounts of blood. MASSIVE. it can make you incredibly weak. take it
easy this weekend and hold your nose when you drink that gatorade.

diane
Adelle - 09 Aug 2005 19:40 GMT
Sending hugs and virtual raspberry leaf tea (good for abdominal cramping)
and chicken broth. Hope this gets figured out soon.

We just lost Doug's uncle to stomach cancer. Hope your cousin's prognosis
and treatment go far better than his. Bur his was an especially aggressive
one that tripled in just a month or so. There really wasn't a lot that could
be done.

Adelle
Alex - 07 Aug 2005 03:26 GMT
Sending Good Thoughts,
{{{{ Donna & family }}}}

GramPaHugs,
Alex,

> Well, it has been a bit of a rough patch these last 2 days.
>
[quoted text clipped - 26 lines]
>
> Donna G

--

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KJ - 07 Aug 2005 05:15 GMT
UGH Donna!! Sending healing thoughts to both of you!!!

~KJ
Charrlygrl1 - 07 Aug 2005 14:54 GMT
Donna G,
I am so sorry to hear about your cousin. Sending prayers and good vibes
to you and your cousin both.
Regarding the ulcerative colitis-do you also have arthritis?? I've read
where certain types of arthritis can also come with Crohn's, IBD or UC.
Reactive arthritis, I believe it's called. It is one of the
spondyloarthopathies-so is ankylosing spondylitis, which I have. In
fact, one of the drugs I am on-Azulfidine-it's primary treatment use is
for UC.
My mom has IBD, which is a much milder deal, and I know what she goes
through. I soooo feel for you.
How are you doing today, is the gatorade helping? When will you be able
to eat again??
Char
Newsgroup Spambuster - 07 Aug 2005 17:14 GMT
Diane --- I am on an antibiotic called levaquin which is a sister drug,
I am told, to cipro.

Char2 --- I am hanging in there.   The cramping is pretty bad and makes
you just want to lay in bed curled up in a ball.   Yes, I do have
arthritis.  I have RA.  I can not take the med you mentioned
(azulfidine) as I believe it is a sulfa based med and I am allergic to
sulfa meds.  As far as when I can eat, the doctors only said not to eat
anything for at least 3-4 days, and then I guess it is up to me if I
want to try to eat, but honestly, I don't feel like eating or drinking,
but am trying to drink to keep ahead of the dehydration issue.   The
cramping is hideous and makes you totally uninterested in putting
anything in your gut, not to mention exhausting.   I get so shaky
feeling when I am up and in the bathroom, that I immediately go back and
lay down as soon as I can.   I am hanging in there though and just
praying lots for my cousin and for anyone else that needs them.  And of
course, sleeping a lot as well.

Thanks for sharing with me about your mom.   Glad to hear she is doing
ok and has not too much problem with the colitis.

Haven't seen you around much lately.   Hope that means you are doing
better and out enjoying yourself!

Donna G
Squirrely - 07 Aug 2005 21:39 GMT
Donna,

You and your family have my prayers, good thoughts, healing vibes, and just
hoping and wishing all turns out well for all.

I feel so much for all you are going thru. It is kind of what I told Jim the
other night, about it would be easier to handle if it was just one thing at
a time, now a bakers dozen at one time. ;-)

Wishing the best.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> Well, it has been a bit of a rough patch these last 2 days.
>
[quoted text clipped - 26 lines]
>
> Donna G
Charrlygrl1 - 10 Aug 2005 15:01 GMT
DonnaG,
Are you feeling any better?
Hope so  : )
Char2
Newsgroup Spambuster - 11 Aug 2005 06:25 GMT
Hi Char2,

Thanks for asking.   Yes, I am feeling some better.   Finally got the
bleeding to stop and am just today starting to add back in a few solid
items such as soups, banana's, etc.   My PCP says to add things back
very slowly as it will still take the cramping a while to completely
clear.  The GI docs says they will do some additional testing, but not
until the colon lining has had a chance to heal more thoroughly.   I'm
not sure how they will be able to test anything once things heal up, but
then, I really don't have a good grasp or knowledge about colitis at
all.   The GI doc doesn't even want to see me for at least a month.
Weird!   The PCP wants things looked at right away, but the GI doc says
no, so what do you do?   Guess my PCP will help me along until it is
time to see the GI doc.   The GI doc approved the antibiotic I was put
on, so guess that is a good thing.   Still have a fair amount of
cramping and bloating and such, but otherwise doing much better.

Have been spending most of my time this week talking with my cousins and
praying with them as they struggle to come to terms with the fact that
it looks like their sister will not survive this cancer.   It is
spreading very rapidly.   She started chemo today and they will recheck
her in 21 days.   If the chemo looks like it is working they will
continue her on it, but if it doesn't look like it is doing anything for
her, they will then stop the chemo and just work at keeping her
comfortable during what time she has left.   Such a difficult situation
and very emotional talking with my cousins and my aunt and uncle.
Ugggh.    

Anyways, thanks for asking and thanks to all of you for the continued
prayers and thoughts!!!

Hugs!

Donna G
Charrlygrl1 - 12 Aug 2005 16:25 GMT
I know this is going to sound crazy, but try not to get too stressed
out.
I don't know a lot about colitis either, but I do know that with IBD
(which my Mom has). Stress really kicks it into high gear.
And I guess we already know what stress does for arthritis.
I know, I know, much easier said than done, right?
My thoughts and prayers are with you and your family,
Char2
Harvey R. Stone - 12 Aug 2005 18:42 GMT
>I know this is going to sound crazy, but try not to get too stressed
> out.
[quoted text clipped - 4 lines]
> My thoughts and prayers are with you and your family,
> Char2

Well said and I agree with you about stress.  It is a battle we all fight.
against and have trouble keeping control.
Harv
Squirrely - 15 Aug 2005 03:31 GMT
Donna,

Glad to hear that the bleeding finally stopped. I hope it is working out
with you starting to eat again. I know how that one goes. Keep us posted to
what you find out about what they are going to do about it all.

Always thinking of you.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> Hi Char2,
>
[quoted text clipped - 30 lines]
>
> Donna G
Duckie - 08 Aug 2005 01:37 GMT
{{{{{{{{{{{{Donna}}}}}}}}
Duckie

> Well, it has been a bit of a rough patch these last 2 days.
>
[quoted text clipped - 26 lines]
>
> Donna G

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