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Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma Support Group


 
03-28-2013, 08:16 PM   #61
Nyx
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Location: Barrie, Ontario

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Hi Cathy...it really does get better..I found it took me 3 months to get back to 'normal'. Hang in there! And welcome to the cool kids club
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Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

03-28-2013, 10:05 PM   #62
calcat54
 
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Location: Half Moon Bay, California

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Hi there Nyx, thanks for your encouragement. This bag is tricky.....just when I think I know what I'm doing, I wake up with a leak. What a way to start the day.

The doc has me drinking only Pedialyte because my kidneys keep failing and I'm taking opium along with a zillion other meds. It is hard to see the light at the end of the tunnel, but I believe all of you thst tell me it's there. Again, thanks for your kind words.
03-29-2013, 08:22 PM   #63
KazT17
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How are you doing Dukeis? Has anyone heard?

Thinkin of you xxx
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Crohn's diagnosed 2010
Ileostomy 2011.
Completion Proctectomy 2012
03-29-2013, 11:46 PM   #64
annawato
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Location: sydney, New South Wales, Australia

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Hi Cathy and welcome to the forum and the stoma sub forum.
It does get loads easier as time goes on. The first few months are definitely the hardest so you are nearly there.
Any questions you have, ask away. There are no silly questions in this group. If you start a new thread for any questions you will probably get more responses than in this thread but you can also ask questions here if that is easier for you until you find your way around the forum. At the top of the stoma sub forum page there is a thread titled stoma support good advice for you, or you can follow this link-
http://www.crohnsforum.com/showthread.php?t=45979
There are lots of handy hints and we are trying to add to it all the time so if you have any handy hints post them there.
Looking forward to have you in our little group,
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Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
03-30-2013, 12:02 AM   #65
annawato
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Hi everyone, I'm going away on Tuesday for 11 days so may not be around as much. Hopefully we will get mobile reception where we are staying so I can keep in touch but if not just think of me sunning myself on the beach. Actually scratch that cos I don't have a swimming costume that fits me anymore since they fattened me up so much in hospital - I'll just have to hide under our caravan awning!
03-30-2013, 12:40 AM   #66
calcat54
 
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Hello Anna, Thanks for the welcome. I'm not very computer savvy, so I appreciate the hints. It amazes me how many people are dealing with the same issues I am having. Truly makes me feel better just knowing I am not alone. My biggest problems right are liquid output and my kidneys keep failing because of dehydration. My doctor has me on Opium and Loperamude. These are helping sometimes byt nit always.
I hope you enjoy your holiday and look forward to getting to know you.
Cathy
03-30-2013, 02:35 AM   #67
CheerBear12
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Hi Anna hope you have a great time and Kaz no haven't heard anything sent him messages as well. We are thinking of you Dukeis
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Rachel
03-30-2013, 12:00 PM   #68
Dukeis
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I'm still alive! Barely. Sorry have not been post. I resp.arrested the night of surgery. It has been a whole lotthen I hoped for. This all I have in me right now.
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Crohn's Disease. Diagnosed 1992
Total Proctocolectomy with permanent Ileostomy
March 20th, 2013 N.A.H was born!
03-30-2013, 12:02 PM   #69
CheerBear12
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Thinking of you x
03-30-2013, 12:02 PM   #70
2thFairy
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Oh no!!! Glad you are still with us, Dukeis! Hang in there... Can't wait to hear the whole story when you are more up to it.
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Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
03-30-2013, 02:30 PM   #71
Herndog
 
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Location: nashville, Tennessee

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Hi, My name is Cathy and I had my ileostomy on January 18th. I hate to admit this but I think I would rather have the pain of the fistulas and abscesses back. The doctor keeps telling me things will get better, but it is hard to believe him as I swallow my Imodium and opium.
So, here I am, hoping to learn from all of you who have been where I am now.
I had mine on Jan 11th and my wound got infected. Just got my wound vac off last week. It's been a long road but its getting better everyday. Hopefully it will get better for you.
03-30-2013, 09:15 PM   #72
annawato
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Hi Cathy, I have very liquid output too. 3+ litres a day. The thing that has helped me most is amitriptyline which is an antidepressant but it causes constipation so is excellent for slowing down the output. I can now get 6 hours at night without having to empty the bag which is a god send. Ask your doctor about it - I was put on it by my IBD specialist.
I'll write more about liquid output when I have more time,
anna
04-01-2013, 02:54 AM   #73
sanni
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Today 5 years anniversary with my ileostomy. Does not feel like that long of a time. Happy I have it.
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Crohn's diagnosed in -93 (age 12)
I have had several operations with the result in short gut syndrome.
Ileostomy (2008).
Meds: Humira and tons of nutrition supliments including B12 and D injections.
Hypokalemia (hypopotassemia) and hypomagnesemia.
My Story
04-01-2013, 03:15 AM   #74
Susan2
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13 year anniversary for me. I don't remember the actual date, but it was just before Easter and I was in hospital over the Easter weekend.
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
04-01-2013, 06:02 AM   #75
2thFairy
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Happy Stomaversary, sanni and Susan2!!
04-01-2013, 06:39 AM   #76
sanni
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I remember the day only cus it was april fools day.
04-01-2013, 07:27 AM   #77
Jaano711
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Happy stomaversary, wow there are days I don't think I will even get to my first stomaversary.

Tomorrow is my 14th wedding anniversary.
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: Janette


I meant to have Jano as my user name, but did a typo!
04-01-2013, 06:27 PM   #78
annawato
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happy wedding anniversary Janette!
04-01-2013, 09:05 PM   #79
calcat54
 
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Ok, I am about to show my ignorance of all things computer. So many of you have shown your support underneath my post. How do I do this? Also, under my bio it says 0 thanks in 0 post. How do I thank you all fir your helpful words and support?
04-01-2013, 09:28 PM   #80
Susan2
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Hi Cathy.

To show support, just click on the "Hug" in the bottom right hand corner of the other person's post; to thank, click onto "Thanks" in the same place on the other person's post.
04-01-2013, 09:56 PM   #81
calcat54
 
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See Susan, Now you know I can at least follow directions
04-01-2013, 10:01 PM   #82
2thFairy
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You got it!
04-01-2013, 10:15 PM   #83
calcat54
 
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04-01-2013, 10:55 PM   #84
Susan2
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See Susan, Now you know I can at least follow directions
04-02-2013, 12:56 PM   #85
Dukeis
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Location: Cabot, Arkansas

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I'm Home! Doing better. When I have more energy I'll post the whole story of my surgery. My wife said I always have to be different. I sure never set out to be with this surgery, but I did.
04-02-2013, 01:10 PM   #86
KazT17
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Welcome home, so glad you are improving. Xxx
04-02-2013, 01:14 PM   #87
CheerBear12
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Glad your home and getting better. Take care and take it easy rest, rest, rest. Thinking of you
04-03-2013, 01:34 AM   #88
rehopeh
 
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Hey everyone! My husband is the proud new owner of what he lovingly refers to as his "poo-poo bag". He has actually been so excited to have it -- it means no more desperate bathroom runs for the foreseeable future! He's still in the hospital recovering from surgery. We had gotten our hopes up that he could have come home today, but the doctors (upon noting his pain level and insufficient stoma output level) are concerned about a possible blockage. So, he's stuck in the hospital for probably another couple of days while they run their x-rays and whatever other tests and/or procedures necessary before he can come home.

Thanks for having this support group available!
04-03-2013, 04:29 AM   #89
2thFairy
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Welcome to the forum and welcome to the stoma club! All the cool kids are getting them these days, don't ya know. Fingers crossed that your husband will be coming home soon. Very few of us here have escaped the initial surgery without some kind of glitch. Have a look around the forum and if there is anything we can help you with, feel free to ask.
04-04-2013, 12:07 PM   #90
Paddy Holmes
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Best wishes for surgery. Make sure you take your teddy bear in with you. I do, in fact if I have to sleep anywhere away from home, he comes with me! No I'm not telling you how old I am, but I got the Beatles autograph before they were famous...that's the only clue.
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