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02-26-2013, 08:34 PM   #1
2thFairy
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We are awesome. We are the colostas and ileostas. Celebrate your awesomeness by joining the Stoma Support Group.

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Last edited by 2thFairy; 03-14-2013 at 09:00 AM.
02-26-2013, 08:37 PM   #2
Nyx
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I didn't see a Subscribe button on this page, but found it under Thread Tools if anyone else can't see it either
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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)!!

02-28-2013, 04:29 AM   #3
annawato
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I was wondering when we would get our own support group. Good on you toothy1
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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..........
03-02-2013, 03:56 PM   #4
CheerBear12
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Glad we've finally got a support forum of our own
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03-05-2013, 08:15 PM   #5
Dukeis
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Has anyone else here felt really good and had to have surgery? What I'm getting at is of all the times I have felt like total crap I never have had to have surgery. Now I'm feeling pretty damn good and I have to have this surgery. I know it has to be done because of the dysplasia, but it seems to make it harder by feeling so well.
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Crohn's Disease. Diagnosed 1992
Total Proctocolectomy with permanent Ileostomy
March 20th, 2013 N.A.H was born!
03-05-2013, 08:20 PM   #6
2thFairy
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That is actually the best case scenario for surgery, Dukeis. The better you feel going in, the faster you heal and the sooner you get to get on with the joys of stoma ownership.

It must be frustrating, though... I can see that!
03-05-2013, 08:27 PM   #7
Dukeis
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That is actually the best case scenario for surgery, Dukeis. The better you feel going in, the faster you heal and the sooner you get to get on with the joys of stoma ownership.

It must be frustrating, though... I can see that!
There you go again I swear you are talking to my wife again.
03-05-2013, 09:38 PM   #8
Bottomless mummy
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Excellent a place were there's more of meeeeee's
03-05-2013, 10:49 PM   #9
PsychoJane
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I must be bliiiiind can't see the suscribe button! xD
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Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
03-05-2013, 10:50 PM   #10
Bottomless mummy
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Top left near post reply :-)
03-05-2013, 10:51 PM   #11
PsychoJane
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Oh.... I looked down! >< thx!
03-05-2013, 10:53 PM   #12
Bottomless mummy
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Haha :-)
03-06-2013, 02:25 AM   #13
Terriernut
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Has anyone else here felt really good and had to have surgery? What I'm getting at is of all the times I have felt like total crap I never have had to have surgery. Now I'm feeling pretty damn good and I have to have this surgery. I know it has to be done because of the dysplasia, but it seems to make it harder by feeling so well.
I'm going to second Toothy on that. The worse you are when you have surgery the longer the recovery time. Our Misty Eyed was feeling very good before surgery, and she recovered quicker. Me, took months to feel human again. It's a major op. So, although it IS harder to get your head around it to have surgery when you feel good, it is better for your body to have it at this time.

We're all rooting for you my Overlord!
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Misty
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!
4gm Pentasa
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03-06-2013, 09:08 AM   #14
Dukeis
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Another things that seems to be making me feel better ( I know this would be short lived) is they have stooped the Humira for surgery. I realize that stuff makes the Crohn's better, but I think it must also zaps the energy out of me. For the last couple of weeks I feel as I have so much more energy. Thinking about it they have stopped the Itraconizole also. It one of those, but I have to take both together so who knows.
03-06-2013, 09:25 PM   #15
annawato
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It could be worth starting just one of them post surgery to see which one causes you to feel lousy. When are you having the surgery? Sorry my poor old brain has forgotten.
03-06-2013, 10:38 PM   #16
Dukeis
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It could be worth starting just one of them post surgery to see which one causes you to feel lousy. When are you having the surgery? Sorry my poor old brain has forgotten.
That is a good idea. Surgery is scheduled 2 weeks from today March 20th.
03-12-2013, 04:53 PM   #17
Susan2
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I, too, was really bad when I had my proctocolectomy and it took me a long time to recover. I had left surgery far too late and had to have a very large amount of flesh removed around the recum and anus.

So get yourself as fit and healthy as you can before the op. It really pays off.
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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.
03-14-2013, 07:28 AM   #18
Dukeis
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Going to see the surgeon & anesthesia today for all the preop stuff. This is getting more real in my head now.
03-14-2013, 07:41 AM   #19
2thFairy
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You can do it!! You've got your own cheering section here. Go in there like you know what you're doing. Yeah, baby!!
03-14-2013, 09:13 AM   #20
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Dukeis, I was in a very similar position. I was feeling really very well going into surgery 3weeks ago. I had a major complication post op and had to have a 2nd emergency op to revise the Stoma. I lost 18lbs in two weeks, mostly muscle, and I have felt very very sluggish since. It is going to take several months to get my muscle mass back and back to full strength.

What I'm trying to say here is I'm mighty glad I was relatively fit pre-surgery, and whilst I really hope you have a smooth procedure with no hiccups, you'll still need all the strength you have to recover.

I'm rooting for you and send my good vibes for 20th March, good luck!
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Dx - Crohn's colitis, 2005

Pan-proctocolectomy and end ileostomy surgery. Alf the stoma born 23rd Feb 2013.

Re-Dx - Ulcerative Colitis, Mar 2013 (Post surgery pathology on my removed colon concluded my "Crohn's" was actually UC!).

My surgery blog: http://davesbelly.blogspot.com
03-14-2013, 11:32 AM   #21
CheerBear12
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Mine is April 11th getting more real for me too hope it goes well for you thinking of you
03-14-2013, 12:54 PM   #22
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For everyone who says they felt bad going into surgery and took longer to recover, I'd like to know what you mean by "bad." Are you talking about the Crohn's itself (a bad flare, etc.) or your overall condition (not physically fit)? I'm asking because I just learned I need to have my entire colon removed, but I also was told I have lost too much weight to undergo transplant surgery (I'm on the liver transplant list). I'm wondering how much of a problem my weight loss might be.

(I only just learned of the colon removal last night, and don't know when my doctor will call back. I will ask him all these questions and tons more, but I want to learn as much as I can in the meantime.)
03-14-2013, 01:26 PM   #23
CheerBear12
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For me it was a really really bad flare up that just wouldn't stop I lost over a stone and went down to just 5 stone. Going toilet 30-40 times a day, heart beating over 100 bpm all the time, looking like I was 9 months pregnant, flu like symptoms etc They tried everything to make it stop after 3 weeks nearly 4 weeks of severe treatment it wasn't working I was getting sicker and sicker. The op was too save my life and I'd only suffered for 4 months with problems. My large bowel could of burst at any time which would of killed me if they hasn't removed it when they did. I've been diagnosed with indeterminate colitis which means they don't know whether I have Crohns or colitis. It took me three months to recover from it and three and a half months for pain too go away. I'm due to get my rectum and anus removed in 7 weeks to make my ileostomy permanent can't take a chance of being joined up with my diagnosis. Scared of this next one coz all I have are bad memories of last one.
03-14-2013, 01:28 PM   #24
sanni
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For everyone who says they felt bad going into surgery and took longer to recover, I'd like to know what you mean by "bad." Are you talking about the Crohn's itself (a bad flare, etc.) or your overall condition (not physically fit)? I'm asking because I just learned I need to have my entire colon removed, but I also was told I have lost too much weight to undergo transplant surgery (I'm on the liver transplant list). I'm wondering how much of a problem my weight loss might be.

(I only just learned of the colon removal last night, and don't know when my doctor will call back. I will ask him all these questions and tons more, but I want to learn as much as I can in the meantime.)
Not to comment too much on your situation since I know little of transplant surgery, but to share my experience about nutrition and weight loss prior of surgery. I once had a surgery postponed due to weight los and low nutrition. The surgeon thought I was too weak to do a good recovery. He strongly reconmended to postpone it by some weeks/month and durring that time I was on a special nutrition diet drinking special drinks 3 times a day to improve bodys nutrition. He would have operated as planned on my demand but who am I to go against his advise. My nutrition levels improved and a sucssesful operation was done in 2003.

I am sure if the doctor thinks a better nutrition level can be achived its wort a try since nutrition effects your healing inside and your scar too. But if the situation is bad and getting worce then what will it help to wait.

In 2006 my operation failed and I did not heal well inside the seams of my intestine did not hold and I had sepsis and a temporary stoma put in 2 days later. The most likely reason was that my body was in too bad of shape (lack of nutrition) to heal well and the lining of the intestines was too thin and weak.

So for me I think nutrition is a thing to take seriously and to use a food/protein sumplement if food is not giving you what you need.
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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
03-14-2013, 02:40 PM   #25
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Thanks for the info, Sanni. I think if my condition doesn't improve, they'll put me on parenteral (IV) nutrition.

CheerBear, I really hope your surgery goes well. It sounds like you've been through enough already.
03-14-2013, 03:43 PM   #26
CheerBear12
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Thank you I know can't believe how bad it was after such a short space of time
03-14-2013, 03:44 PM   #27
CheerBear12
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Hope yours go well too have they said when they are going to do it?
03-14-2013, 05:02 PM   #28
Boloby
 
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Hope yours go well too have they said when they are going to do it?
I'm still waiting to hear back. No one called me today, so tomorrow I'm going to be hounding them.
03-14-2013, 05:41 PM   #29
CheerBear12
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Let me know what they say
03-14-2013, 07:10 PM   #30
Dukeis
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Did all my pre-op stuff today. All systems are go for next Wednesday.
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