Off Pred!!!!.....and other things.

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Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/17/2009 10:48 PM (GMT -6)   
I'm finally off pred! Yea! I've been on it pretty much for about 4 years. I have some permanent side effects from it too. BUT now I'm done. I was on 5 mg for the last 2 days (slow taper remember) and I forgot to take it this a.m. and I couldn't even tell. So I;m not going to take it any more. All done.
Don't worry all those of you out there who want to lecture me about it nono, I'll be fine. I'll be glad to have my mustache stop growing and for my acne to go away and for this fat face, butt, and belly to go far far away!

I went to see the surgeon today for a follow up (for the 2nd surgery, not the original). He a terrific surgeon! I asked about the pain I'm still having. He thinks it muscular. And it's just taking a longer time for me to heal completely b/c of the pred. and all the trauma and inf. that went on. (He still tells me how BAD the inf. was-OK I get it. I'm lucky to be alive....really scary to think about) He said he can't tell me when the pain will all go away, but it will. GOOD.

I don't remember who it was, but someone recommended try the SURE SEAL RINGS. They said they loved to use them in the shower and they were hooked on them. So, I ordered some (Edgepark couldn't send me samples of them). But I don't really know how they are supposed to work. What purpose do they serve? I thought they'd protect things from the shower, but the center is an open hole.
Does anyone know what I'm supposed to use these for? B/c now I have a bunch of them LOL smilewinkgrin

What do y'all think of this:
I work at a small animal clinic. There are only 9 employees. 8 F and 1 M. When I started working there in 2001, I was a completely healthy girl. in 2002 I was dx with u/c. Shortly b4 I started another girl was dx with a blood clotting disorder (she had multiple miscarrages and a still birth b4 diagnoses) She ended up having a hysterectomy and getting another clot and almost dying. Another girl there then developed IBD-not u/c or crohns...yet. Then another girl was dx with a clotting disorder too. (she also had a still birth b4 diagnoses). Then the first girl (not me) was dx with crohns last fall (poor thing). THEN the guy was dx with diverticulitis. THEN I got a blood clot! WHAT'S THE DEAL! Do you think we're just a bunch of unlucky saps who happen to be drawn to each other? Or have we entered the twilight zone of work places??? My hubby thinks I should quit. There are 2 women who've worked there for 15+ years without probs. That's what I keep telling myself. I love my job. I'd hate to leave b/c of superstition. But it just keeps getting stranger. And weird stuff happens there often. Not always bad! But very suspicious.

And one last warning:
I'm a horrible speller. I'm pretty good at grammar and punctuation, but I can't spell worth a darn. Every time I post, I have to go back and correct my spelling so I don't look stupid, and it takes me forever sometimes to post. (Especially when it's long like this) But not anymore!! I'm letting it all hang out! I don't care anymore about spelling or punctuation. So BEWARE of my mistakes. It may hurt yoour eyes.

p.s. I know this is all over the place. My brain works like this all the tiem. That's why I'm so interesting and entertaining. turn
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

Post Edited (Chasblah) : 2/17/2009 10:01:03 PM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/18/2009 9:51 AM (GMT -6)   
LOL i am always random, and mi spalling is wurt than urs! :D and i am so gonna use my randomness and say its what makes me intersting and entertaining (if i am not, lol)
anyway, the sure seal things are confusing, this is what they do, they go over the cloth part of the wafer, the bandaid like part.

You are supposed to put them on with the bag off, then just fit them down and seal them on.

BUT i thought htat was too hard, so what i did was leave the bag on, roll it up, then cut the sureseal thing where it would openup. You will probaby have to trim the outside of it some.
Anyway, then i can just open it up andput it on that way.
That was a horribly horrible explanation!

For your work thing, it could have something to do with stuff ya'll are coming into contct with from the animals, or it could just be bad luck.
I used to wok at circuit city, and i workd with at the front desk and in the warehouse, and besides me 5 other girls hwo worked there got sick with random dangerous things inthe time we were there.
One girl ended up with a brain tumor, we woman had some random stomach problem that were never really diagnosed, but she was very sick for a while, my bff was pregnant and had a horrible time and after that ended up with very high blood pressure and constant dizziness. Another friend had just a bunch of random things wrong with her, and another ended up having to have a DNC because she had a calcified baby in her.

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/18/2009 8:59 PM (GMT -6)   
Oh wow...you guys have horribly depressing work environments!!! : )

I work alone. I have collegues...and other services that I work with in relation to my clients, but really I'm a lone ranger counseling families two at a time. : )

Anyway, I am so excited for you being off prednisone! I'm on my second day of 5mg and am doing fine with it. Except for that nasty migraine...who knows what the hell set that off. But I'm assuming it has something to do with the vanilla insense I had in the bathroom. I just got my Hollister deotorizer so I have been using insense in the bathroom each time I emptied my accessory. However, I do like this M9 and I think I will purchase a case of it online b/c it's much more economical...even though I was given a $5 discount from my local medical supply facility for no reason...maybe I'll ask them about a bulk price. Hmmm.

You know what? I've gotten my stress 'stach and beard going on...meaning I have sandpaper skin all of a sudden. What?! It's stupid silly. Oh and get this...those wonderful cysts I had in my armpit prior to surgery all went away almost immediately after the UC was gone. Well, Sunday night another one started to develop and it was pretty large by Monday. I wonder if they're just going to be something that comes and goes when I'm not feeling well? I'm seeing Dr. ****** tomorrow so I have many questions for him before I ream him for his insane pain management practices. Errogant prick.

Leah, I am sad to hear of your friend having to have a DNC...that must have been just horrible. And actually, each of you guys have friends/co-workers that have experienced such horrible situations as well. It's really my family that has all the constant illness and diseases popping up. We've been in crisis mode for many years now...only have there been brief moments of normalcy, but mostly there's always something going on!
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/18/2009 9:54 PM (GMT -6)   
Summerstorm-
Your explaination totally confused me more LOL! What the heck is the cloth part of the wafer??? and what purpose do the rings serve? I thought they'd keep things dry, but there's a big hole in the middle. I don't get it at all.
And that's so sad about the calcified baby. I feel like puking with sadness for her.

Robin-
what's the deal with your dumb surgeon! What pain meds do they have you on now? Did you *** you surgeons name, or did the moderators?

FYI-my work friend with crohns told me today that she has to have a bowel resection! That poor girl just keeps getting things thrown at her. They hope by removing the stricture in her ileum, they may be able to cure her and she wouldn't be affected anymore since she is on remicaid and getting under control.....(but we all know it'll probably come back) :(
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/20/2009 1:37 PM (GMT -6)   
Chassity...there is supposed to be a hole! It goes on the wafer part (cloth area that holds to your skin), not the pouch...it works by keeping the area dry, so the tape/cloth doesn't deteriorate faster or keep moisture close to your skin. I found out about them here and LOVE using them...I just wipe the area off after a shower and go...

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/20/2009 6:52 PM (GMT -6)   
Is there a good way to keep the cloth part of the bag clean? I really am liking the New Image beige bags from Hollister. I'm ordering the mini versions as well b/c the normal size seems a little big at times. It also gets heavy and hurts my stoma area b/c all the weight is so far down.

Anyway, I've showered many times with my Hollister wafer and it hasn't shown much change. But I'm still such a newbie to this that I could be that I've just had a fluke deal.

I know some of you change your wafer weekly, and the bag every 3 days or so...does everyone follow this same practice?

I'm not trying hijack Chassity's board, but there are just my curiosities. : )
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/20/2009 10:04 PM (GMT -6)   
Ah bummer.
I thought they would keep my stoma dry if I showered with my bag off.
OOHHH I just had an idea. maybe I could put plastic wrap on the stoma and hold it on with the sure seals? I don't like to have to wait for the bag to dry. I shower sometimes with everything off, but I can't always do that.

Robin-can you just wash the bag? In the sink, or shower? I wipe mine off with antibacterial hand wipes when it needs it. But I change the bag every 3 days, so I don't need to very often.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/21/2009 7:48 AM (GMT -6)   
Robin, I use the Hollister New Image, too, and I love the combination of the wafer with the Sure Seal...it keeps it dry. It will depend on your stomach and scars as to how much it might pull away...mine are pretty bad and have a lot of dips so the wafer can pull away, when I don't use the sure seal, and I am very active...

I usually change every 3-4 days. I can get longer sometimes but for me, the day I think I can go one more, I usually have issues!! Murphy's Law:)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/21/2009 8:10 PM (GMT -6)   
yeah Congratulations on finally being off Pred!!! Woo Hoo!!! yeah


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/21/2009 8:48 PM (GMT -6)   
YES!
And now I'm on a diet b/c the extreme hunger is gone.
Now I have this bad habit of eating too much and having a milkshake almost every day! (It had been years since I had one b4 my surgery.)
BUT I'm going to get control. Hip Hip Hurray!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/21/2009 10:21 PM (GMT -6)   
Tomorrow is my last day of prednisone!!! Yea!!! I too will be on a crazy-ass diet for the first time in two years!!! Oh yeah...I'm dieting...oh yeah...I'm going to get skinny...oh yeah...life is good again...oh yeah...no more prednisone!!! (that's to the tune of...'Go Whoever, It's Your Birthday)

: )
: )  Robin
 
28 year old Mommy of a 1 year old and Wife for almost 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
"Your mind is like a parachute, it only works when it is open."
-Unknown
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/21/2009 10:26 PM (GMT -6)   
Yea Robin! We are going to be skinny hot mamas! With bags of poo under our shirts.
HOW HOT IS THAT!!!!!!!!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/23/2009 6:01 AM (GMT -6)   
turn ROFL!!! turn
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/23/2009 1:32 PM (GMT -6)   
Chassity you're so funny!!! I know!!!! How sexy are we with our bags?! : )

I actually just found all kinds of clothes in my basement that I completely forgot about...so it's kind of like getting an entirely new wardrobe!!! I'm still going to VS and get new bras though...and I am going to splurge on some super cute jeans and slacks...then I have to get new tops b/c I'm a little paranoid with my accessory, so I just have to have some tops that make me feel comfortable. : )

Something I have been splurging on lately is shoes. I can wear them no matter my size, so I've purchased five pair in the past week and a half. My husband gave me four of them as an anniversary gift...he's awesome! I gave him a pocket knife...he's been wanting another one for awhile. Oh, and get this...there's a knife brand Byrd and a certain style or whatever is called Robin...so their's a Byrd Robin knife! How cool is that?! My name backwards!!
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/23/2009 1:41 PM (GMT -6)   
lol robyn, i dont blame you for getting lots of new stuff, that's awesome!

thanks for the kind words for my friend, that has been almost 10 years ago, but it was really hard on her, and it was such a strange thing to have happen.

Chassity i am sorry i confused you, lol.
and i have no idea how to explain it any different, lol. i'm sorry!

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/23/2009 9:24 PM (GMT -6)   
That's ok Summer. I made my own device. I'm thinking about patening it and selling it (you can check it out on the 'wow it worked topic'). Then I'll be a million....no billionaire. Then I won't have to win the lotto (but if I did, I would share it with people with the initials CS-and so should anyone who wins the lotto! Don't you think so?) tongue


Robin, did you know that Robin is also the name of a bird (i'm just kidding, of course you know.) So, if your husband goes hunting for Robin birds with his Byrd Robin knife and then takes it home to feed his Robin Byrd wife.......How cool would that be!

Ok, Now i'm just being silly.

p.s.-I caught 2 more mice. rolleyes
When we move, we're NOT disclosing that.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

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