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Below are the 20 most recent journal entries recorded in Ostomates 'R Us' LiveJournal:

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Friday, September 25th, 2009
8:08 am
[gows]
As an ostomate, you know you may be in for a rough day when . . .
. . . you drop your freshly Stomahesive'd pouch--and it lands adhesive-side down in the dusty corner of the bathroom next to your trash can.

. . . your stoma has been SILENT for the last few minutes as you prepare to get out of the shower. You bend over to grab a towel, and your stoma blorps onto the floor. (Thank god for washable throw rugs!)

. . . all of this happens in the first half-hour you're out of bed.



I tell you, I've got a bad feeling about today. *chuckle*



(x-posted)

Current Mood: pensive
Sunday, November 16th, 2008
11:34 am
[gows]
Only a fellow ostomate would /really/ get this . . .
Last week, I had dinner with some friends. Part of the meal was steamed watercress and enoki mushrooms.

The next day, when I went to change my pouch, TMI.Collapse )

X-posted in a couple of places.

Current Mood: silly
Saturday, October 4th, 2008
12:38 am
[being_star]
Wondering
Hey There,

Wondering if anyone here has had a total proctocolectomy? Im scheduled for sugery next month and wondering if anyone had any advice, thoughts on the srugery or complications due to.

Thanks!
Friday, February 15th, 2008
1:52 pm
[ashley_spleen]
GutRock Concert Series

 Hey guys!

I know I don't post here much or often, but that's because I don't personally have IBD (my father does), so it's not too often I feel I have something productive to contribute to people's posts, or have something to post myself.

Right now, though, I do have something to post! And I swear, it's not spam. This is actually relevant to you guys, so I'm letting you know about it. I won't post about it again or anything, I just want people who might want to participate to know!

For starters, myself and 3 other young women started GutRock Concert Series last year. It's a concert series that raises awareness and funds for IBD. We donate 100% of our profits to IBD research (in 2007 we donated $2500, and our 2008 shows are in planning stages now and will be in March and April).

For more info on that, search for GutRock Concert Series on facebook (we have a page, and a group) or check out our myspace at http://www.myspace.com/gutrockcanada. www.gutrock.com will be up and running before March 10th, as well.

Moral of the post (here's the spammy part!): We're in a competition on facebook called Razoo Speed Granting. If we get the most votes, we will receive $1000, second most votes, $250.

If you use facebook, we'd really appreciate it if you went to this link:  http://apps.facebook.com/speedgranting/proposal.php?pid=613&amp;ref=NjEzfDE4NzkwMDQzNQ%3D%3D

Once there, add the Razoo Speed Granting application (don't worry, after voting you can delete it immediately and get rid of that pesky application if you want to!), vote for GutRock Concert Series, and then either delete if you want, or help spread the word and get more votes for the cause!

The money will be used to pay upfront costs that we have in hosting the concerts, and will therefore save the money from coming out of the donation in the end! What is needed for costs will be used, and the rest will be donated, along with our show profits, to the London Ontario and Kitchener-Waterloo Ontario chapters of the Crohn's and Colitis Foundation of Canada.

Every dollar counts! Lets get a few steps closer to finding the cure!

(this will be cross posted to other IBD related communities. I promise, I am a real person taking the time to type this and post it, and it will only be posted once. I'm not a spambot!)

Questions, comments, concerns - feel free to comment this post, or drop us a line through myspace or facebook!

 
Monday, October 8th, 2007
7:30 pm
[bfirrera]
Help with rash...
My partner had a temporary colostomy done last month. He had a foot of his colon removed due to complications from his diverticulitis. He hopes to have his colostomy reversed some time after the new year.

Anyway, the appliance that his bag hangs from is a Hollister two-piece flange skin barrier (though I'm sure this question may apply to other brands). Since it's mostly attached by adhesive bandage (like a band-aid), we've found that though he doesn't have an allergy to adhesives or bandages necessarily, but we think it's just the length of time that this thing is stuck to his skin...

...he's getting a bit of a rash underneath the adhesive (it looks similar to diaper rash).

The nurse gave us a paste/lotion to apply to the rash, but because it's lotion we're afraid that it will make the adhesive not stick as well (if it's at all lubricated). I did put some on during the change before last and quickly rubbed it in and wiped off as much excess as I could but the appliance's adhesion only lasted about two days before it started peeling off (normally we've gotten about four to five days).

Does anyone know of a good lotion for his skin that won't degrade the adhesive? (or perhaps is there some kind of skin glue I can apply to make the adhesive stronger?).

Thank you for your advice!
Tuesday, July 31st, 2007
9:03 pm
[pokemonika]
Hi Ive never really posted in here before as far as I can remember. So anyways, my name is Monika, im 20 years old and have had IBD for 5 and a half years now. I was originally diagnosed with mild UC in Jan of 2002. Well it quickly turned really severe. I was in and out of the hospital until november of 2003 when i had my colon removed and an ileostomy created. After my colon was removed they said it looked more like crohns colitis, so up until a week ago I believed i had crohns colitis. At the start of June i went to a surgeon in vancouver, BC to discuss having a j pouch made and he said if it turns out to be crohns, he will not do it. Its too risky. I was obviously devastated. So i got a call a week ago and they said I do infact, or rather did, have UC! So im going to be having surgery sometime in the fall :) Im sooo happy. Ive wanted to be rid of this bag since i got it. Im so excited about this surgery.

So anyways, i was just wondering if anyone here has had a j-pouch made and what i can expect. I know its a 2 part surgery and that ill have to eat carefully. But i already eat really bland so im used to all that fun stuff.

Oh and i dont know if this is allowed, but ive listed a TON of coloplast ostomy products on ebay for very cheap. If anyone wants to check them out this is the link
http://search.ebay.ca/_W0QQsassZsensitive_sheepQQhtZ-1

I hope everyone is doing well! :)
Tuesday, June 19th, 2007
8:58 pm
[lilshorty2507]
hey 
My name is Min, I'm 24 years old I have had my colostomy for 2 and half years due to a blockage 11/3/04 I'm lucky cause I was in a coma for week I have cerebral palsy and reigers syndrome. If you want to be added to my live journals you can add to this journal or sugaqueen either or I'll add you
Monday, June 18th, 2007
7:53 am
[catnap40]
Golytely
I just scheduled my first colonoscopy since my cancer surgery last summer.
The prep packet arrived in the mail with a prescription for Golytely (sp?).
It's the same stuff he prescribed for the operation that resulted in my colostomy.
It was a pretty miserable experience, as I recall, when I was traditionally equipped.
Now with the ostomy, I am a bit concerned on how this will all work out.
I have had diarrhea since my ostomy but it was nothing like I remember the bowel cleanser.
Has anyone had any experience with bowl cleansers and ostomies? Does anyone have any tips?

Current Mood: curious
Friday, May 18th, 2007
10:12 pm
[electric_bliss]
Ostomy week from hell
And there doesn’t seem to be any end in sight.
 
So a couple of weeks ago I went to see my Ostomy nurse Jo cuz I was having a red ring around the stoma which was looking pretty angry. She suggested that I change flanges to see if that would help. At the time she suspected that the flange I was using was just pressing down too much and causing the ring.
 
Turned out she was right and the new flanges worked in removing the depression that was forming around the stoma.
 
But a couple of weeks later I started getting redness around the stoma so back I went. Now because she is a busy woman I ended up having to go a day before I normally would have changed my flange and low and behold everything looked great.
 
So she sent me home with the orders to start changing the flange every 3rd day instead of every 4th. The story should have ended here with good new all around but it didn’t.
 
Somehow over night almost my stoma did a flop to the side and I started to blow (meaning they began leaking) flanges every day. Some days I have had to change two or three times in a day. I have not slept well in nearly five days I am so worried about the damn thing blowing.
 
At this point we are trying several different methods to get a flange that will work but if none of this works the end result will be a surgery to fix the stoma. Part me of wants to just go in and have the damn thing fix because I am not sure how many more weeks of this I can handle but then of course I don’t WANT surgery.
 
I won’t unfortunately be going out much in the next week or so till we get this under control, unless I can either come home quickly or use the shower at friend’s homes so I can clean up and change the flange if it blows while I am out.
 
It is so frustrating and it makes me want to cry some times but I am trying to stay positive.
Monday, March 26th, 2007
10:31 pm
[ashley_spleen]
I don't know if anyone is from remotely anywhere near the areas of Kitchener-Waterloo or London, Ontario, Canada - but if you are or know someone who is...send them out to these. Fun evenings that help your guts!


 

http://www.myspace.com/gutrockcanada

Very x-posted. Sorry for the annoyance, but I want everyone to hear!
Saturday, March 3rd, 2007
12:55 pm
[hey_its_jandrew]
dating site
There is a fairly new dating site for people with irritable bowel diseases or ostomies. Only twelve people are signed up so far, including the site's creator. Y'all should tell people. It's at http://www.ibdmatch.com

-Jan
Wednesday, February 14th, 2007
6:31 pm
[electric_bliss]
Eakin Seals for sale
If you use Eakin Seals please check out this link. I am selling some as I am allergic to them and can't use them. They are a great deal and I am willing to ship if need be.

http://toronto.craigslist.org/hsh/278826090.html
Friday, November 17th, 2006
12:41 am
[ashley_spleen]
Hey guys!

Sign this petition to stop cuts being made to IBD research funding!

http://www.thepetitionsite.com/takeaction/521085067
Tuesday, November 14th, 2006
3:34 am
[ashley_spleen]
Hello everyone!

My name is Ashley, and I'm the Volunteer Coordinator for my local branch of the CCFC.

I just wanted to say hi, and wish everyone the best of health, and also bring a couple things to your attention.

First, check out the Kitchener-Waterloo CCFC myspace page! Feel free to add us as a friend, whether you're from KW or not. Anyone in the CCFC who's familar with myspace - I strongly urge you to make a myspace for your branch! It's a great way to spread the word, promote events, recruit new volunteers and connect IBD sufferers!

CCFC KW Myspace!

Also, if you're a Candian Facebook user, I think you should check out the CCFC group! It's a great place to connect IBD suffers, connect CCFC chapters, and share fundraising and event ideas!

CCFC Facebook group!

I look forward to chatting with you all!

-Ash
Sunday, October 29th, 2006
7:14 am
[catnap40]
Success!
Traveled 2 1/2 hours to Cincinnati to watch a football game at the University of Cincinnati and had no problems! I even drank beer!
Very happy with the convex flange. Thanks for the advice. It has made things much easier.

Current Mood: chipper
Thursday, October 26th, 2006
8:09 pm
[catnap40]
Dealing with noise
I am the managing editor of a newspaper. I spend most of my time in my office sending nasty e-mails to subordinate editors and glaring out my window at reporters.
If my stoma decides to do a little talking, there is no one there but me to hear it.
Occasionally, however, I am thrust into situations where I have to deal with the public.
Take today. I was in a small conference room with two other editors and two candidates for political office.
Everyone at work knows my situation, but obviously, the candidates did not.
About half-way through the interview, my stoma made a little chirp.
A few minutes later it asserted itself a little more loudly.
Both times it happened I showed no reaction and maintained eye contact with one subject or the other.
Later, both editors said the noise was quite clear and sounded exactly like what it was.
I figure ignoring it and continuing onward is the best policy. Both editors agreed, although I think they found my discomfort a little funny. Newspaper people are not the most compassionate bunch. (one suggested I carry a rubber duck with me and mutter at it each time my stoma makes a noise.)
So, what do you do when your stoma starts talking around strangers?
Wednesday, October 25th, 2006
5:29 am
[catnap40]
Concave? convex? I am confused
I have had my stoma since late July and am starting to have a few problems.
I lost a lot of weight in the hospital and am starting to pack it back on. I am about to enter another round of chemo therapy so a radical diet is not the best idea. I am still getting my stamina back and my exercise has been limited. (also, I like ice cream).
My problem is that I have had inconsistent luck with my wafer adhering to my skin. Sometime they last a long time, other times I experience a leak in a matter of hours.
My stoma only protrudes a small amount and I have read that a convex wafer might help.
I have a few samples but I can't see how they would work.
My belly is round, the wafer bends away. It seem counter-intuitive to me. I have not been able to find anyone to explain it to me.
Anyone have any experience?
Here is an account of one of my learning experiences.
Tuesday, October 24th, 2006
3:26 pm
[electric_bliss]
Odd question
So a little background before the question.
 
Last night I went to my first concert since I got my ostomy. Of course I had to pick a punk/death metal concert to go to (Gwar for those interested). I had two slices of pizza and a glass of juice about two hours before the concert.
 
I emptied my pouch before leaving and again when we got to the concert location. Normally I would assume I was done until I eat again. The amount I emptied was consistent with what I ate.
 
However the minute we entered the area where the music was playing, heavy bass, loud drums and basically pulsing music flowing through the body, was when I discovered something new about my ostomy.
 
What I discovered is the vibrations triggered my ostomy to go and go and go. I had to empty within 5 minutes of entering the place and twice more in the next two hours. I could feel the correlation to the music and when the ostomy excreted. It was a little funny and totally embarrassing as I had to keep running out to empty him.  
 
My question is has this happened to anyone else? Has loud music or things like roller coasters or other types of entertainment affected your ostomy.
Tuesday, September 26th, 2006
11:14 pm
[electric_bliss]
Intorductions
Hello all.
 
In the last year I have gone through the life altering change of having an Ileostomy installed. It has made my life a 1000 times better but has also left me feeling a little lost.
 
One of my best friends also received her very own Ileostomy in the past year, we often joke that she was test driving it for me before I had to get mine.
 
We have managed to struggle through learning about ostomy care, the emotional side of things as well as the physical stuff. However recently we discovered we are just not a big enough support system so I have the bright idea of starting an LJ group. Imagine my surprise to find out there was already a group.
 
So I signed myself up and here I am. My main propose for needing a group is that I have very special needs as I have sever skin allergies. I am currently struggling to find the correct combination of products that will work for me.
 
Yesterday I found out by accident (thanks to a coloplast representative who took the time to ask about my ostomy and send me some of their supplies) that another company makes the type of flanges I need.
 
I am deeply convex which means that few companies carry the products I need. I did not even know that coloplast offered this flange. If I had known we could have tried it to see if it would help prevent the skin from shredding around my ostomy.
 
This got me to thinking. There MUST be someone else out there with the same problems as I have and if not at least others who can share the products they are using which would be a good help.
 
So I guess this is my hello and introduction and my hope that in finding this group I can find some additional support and help.
Thursday, May 18th, 2006
5:45 pm
[owlsdragon]
New research on IBD and Crohn's Disease
For those who haven't seen the research or heard about it, here are some new perspective's on the cause(s) of IBDs, particularly Crohn's Disease. The article is a fairly easy read and explains why IBDs may NOT be an autoimmune disorder as previously believed.

http://www.ibdanswers.com/Document.2004-04-21.0931063555
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