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03-14-2013, 07:22 PM   #31
KazT17
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Have they brought your surgery forward Rachel? It was supposed to be May?

Just had a stay in hosp with blood clots again

Good luck Dukeis and Boloby xxx
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Crohn's diagnosed 2010
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03-15-2013, 02:21 PM   #32
Dukeis
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They gave me a kit yesterday that has a practice stoma in it. Sure hope the real one isn't anything like this thing. It is hard as a rock! It looks like a dried up sponge. It is pretty cool to try it in different places and kind of get an idea where the best place for it will be.
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Crohn's Disease. Diagnosed 1992
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03-15-2013, 02:30 PM   #33
2thFairy
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I got one of those kits too. It is a dried sponge. However, a real stoma is squishy like a noodle. You're gonna have fun touching it!
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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
03-15-2013, 02:40 PM   #34
CheerBear12
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No still may 2nd Kaz my pre op is April 11th, good luck Dukeis and boloby. Hope your ok Kaz big hugs xx
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03-15-2013, 08:51 PM   #35
annawato
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Boloby I was in hospital on TPN for 4 months before my last resection and ileostomy. The main thing they are trying to improve is your protein (albumin) levels since this is essential for healing. Because I was in hospital for so long I was VERY unfit and the postop week was the hardest I've been through plus the rest of my recovery is very slow - wound infections plus just not feeling well. So It is essential to be as fit as you can be and to have really good nutrition beforehand. Not always possible when you are sick but something to work towards.
Kaz, hope you are well now - blood clots can be a worry.
Dukeis, all the best for your op (again )
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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..........
03-16-2013, 03:19 AM   #36
KazT17
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Just dyed my hair .... Oops wanted dark auburn, looks a bit purple to me ha ha xxx
03-16-2013, 07:44 AM   #37
Dukeis
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Sitting at the table last night eating my 17 year old tells me what I need to do when I'm awake enough after surgery. He said I need to ask the nurse what the hell did you'll do to me. I came in to have my tonsils removed, what have you'll done. He said just think of how shocked they would be and they would be frantically trying to figure out if I was right. The kid has a bent sense of humor, but I thought it would be funny.
03-16-2013, 07:49 AM   #38
KazT17
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That's brilliant Dukeis, I love it!
03-16-2013, 07:51 AM   #39
Susan2
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I got one of those kits too. It is a dried sponge. However, a real stoma is squishy like a noodle. You're gonna have fun touching it!
It feels a bit like the inside of your cheek.
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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.
03-16-2013, 08:01 AM   #40
2thFairy
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It feels a bit like the inside of your cheek.
Yeah!! That's it!
03-16-2013, 11:52 AM   #41
CheerBear12
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Oh Kaz I like purple shame I can't dye mine
03-16-2013, 11:58 AM   #42
2thFairy
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For a CheerBear, you sure do end a lot of posts with . Ha!
03-16-2013, 12:36 PM   #43
CheerBear12
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Lol I do actually lol never thought of that lol
03-16-2013, 05:02 PM   #44
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OK, so I just learned that the bag will be temporary (few months). Now I'm interested to hear from people who have had this. I did several searches but couldn't find any existing threads about the issue. I've read numerous threads and posts about permanent bags, so I'm wondering how much better people are doing after having just a temporary bag.
03-16-2013, 05:41 PM   #45
2thFairy
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CrohnsHobo, LOSTnut, MsOJ have had colostomy and reversal. You might send them a message or hopefully they will see this now that I've tagged them and be able to tell you about it. There are others who have had ileostomy and removal, but I thought you had mentioned colostomy.

Did you find out more about what the surgeon will be doing? Are you having part of your colon removed?
03-16-2013, 06:59 PM   #46
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Did you find out more about what the surgeon will be doing? Are you having part of your colon removed?
What I know right now is that the entire colon needs to be removed, but the question is whether they can time it to coincide with my liver transplant. I've only spoken with the doctor who diagnosed me; I will meet the surgeon and her team once I get an appointment scheduled.

The reality of my situation still hasn't hit me. It still seems like some remote future, even though it's probably very soon.
03-16-2013, 11:31 PM   #47
annawato
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My first ileostomy was temporary and this one may be. I had the first for a year and was relatively well when I had it but started getting problems as soon as I was reconnected. A year and a half later i ended up with this one which may or may not be temporary depending on how I'm doing. There are no medications left to control my crohn's so the ileo is the only alternative but doesn't ensure the crohn's won't return upstream of it.
Samboi has a temporary ileostomy for bottom problems - so far it hasn't helped but things are improving with medication so she may get a reversal later this year.
I think it depends on what you are having the stoma for as to whether it is successful both during and after the reversal.
Is your liver condition crohn's related? I really feel for you having to deal with that on top of everything else. I know what you mean about not 'feeling' the reality of the situation. I guess its the minds way of coping with what is a very 'unreal' situation. Probably good to be feeling like that and taking one day at a time rather than worrying and obsessing about the future.
03-17-2013, 05:31 AM   #48
Samboi
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Yup - I have a temp ileostomy due to severe perianal disease.
There are still significant problems with inflammation - but I'm getting there.
Reversal was going to be last Xmas - currently looking at Aug - Sept if current meds do the trick and get it under control.
Looking good so far and I'm very excited about the possibility of going back to regular pooping.
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03-17-2013, 06:23 AM   #49
CheerBear12
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Mine is temp at the moment but will be made permanent in 7 weeks eek I'm fine with it don't really have any problems.
03-17-2013, 02:46 PM   #50
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Is your liver condition crohn's related?
Well, my liver problem is because of an autoimmune disease (primary sclerosing cholangitis), so it's possible there's some relation. I was diagnosed with both in 1999 but was symptom-free for years. Crohn's struck first, in 2008, followed by the PSC in 2011. I was put on the liver transplant list last April.
03-18-2013, 12:57 AM   #51
annawato
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Well, my liver problem is because of an autoimmune disease (primary sclerosing cholangitis), so it's possible there's some relation. I was diagnosed with both in 1999 but was symptom-free for years. Crohn's struck first, in 2008, followed by the PSC in 2011. I was put on the liver transplant list last April.
Gosh that is really hard to have both. I just read that it is common for people to have both diseases and that liver transplants are very successful in treating the disease. I hope you can have your transplant soon so that you can get on with the rest of your life. It must be very frustrating waiting. Hugs.
anna
03-19-2013, 10:54 AM   #52
2thFairy
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Hey Dukeis! Tomorrow is the big day. How ya doing?
03-19-2013, 11:28 AM   #53
KazT17
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Yes, good luck Dukeis, be thinking of you xxx
03-19-2013, 02:20 PM   #54
CheerBear12
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Good luck Dukeis thinking of you keep me posted on how you are. Hope it goes well my turn in 6 weeks :/
03-19-2013, 05:29 PM   #55
Dukeis
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Thanks everyone for asking! I'm camped out at a hotel tonight with the family. To far to drive in the morning. Have to be at the hospital at 6:30 am. I'm getting really nervous now. Wishing someone would say just kidding you don't have to do this.
03-19-2013, 05:41 PM   #56
2thFairy
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How cool to be in a hotel with your whole family! It's like a mini-getaway. See? You can turn it into something groovy....a distraction.
03-20-2013, 02:12 AM   #57
Terriernut
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We're all rooting for you! I'm sorry you need to go through this, and I know you would much more like to be anywhere else than going through this.

I can only wish you the best for your proceedure, and may you heal quickly and find health and a life time of remission.

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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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03-20-2013, 07:43 AM   #58
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Just what we need right now!
03-20-2013, 06:24 PM   #59
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Hope to hear good news from Dukeis.
03-28-2013, 06:27 PM   #60
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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.
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