just told another friend!

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Date Joined Aug 2006
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   Posted 7/11/2011 11:43 PM (GMT -6)   
so my friend called me today, we talk every week, and was telling me she was having a lot of trouble with her stomach, and that she had been searching on internet and was terrifed that she might have to end up with an ostomy bag, and that would be awful! and i laughed and said, you don't know what kind of surgery i had? (she has seen me numerous times, i just thought she knew) she got really quiet and then said, no, then she said, you poop in a bag! I busted out laughing, i said, yeah i thought you knew. she said no i never noticed, do you still poop in a bag? i was still laughing, and i said yep, did you ever know it? she said, OMG no! i said, well then, do you think it's gross, she said, yeah kind of, i said yeah a bit, and she said, but i feel a lot better about it now, in case it comes to that, i know it's not so awful! she said, that's great im so glad to know that, and that we could be gross together if she had to have one. That's not an insult coming from her, we have a special kind of friendship, lol. I thought she knew, and when i found out she didn't i was a little nervous, but she seemed to be ok with, actually happy about it. and i was glad to be able to help someone, in real life. hopefully it won't come to that for her, she doesn't know what she has yet, she's just been having really bad problems, and going to the bathroom everytime she eats, she's really fed up with it, cause like lots of us, she has her life built around bathrooms, and is afraid to go places. so it helped her a lot to know that i had had that same problem for years, and managed to come out of it fine! I don't usually talk about it, not because im ashamed so much as i just don't think anyone wants to hear about my poop, lol. I mean, i dont really want to hear about anyones, but i thought i could be helpful by telling her, and i was glad i could be!
just thought i'd share that

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Date Joined Aug 2007
Total Posts : 1998
   Posted 7/12/2011 5:02 AM (GMT -6)   
A good story to share with ALL on this board... You see, people, even close friends, are clueless to being able to SEE the bag!!! :) Or smell it, or hear it! THanks Summer for being brave and talking to her about it and for sharing your story. AWESOME!!!!
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

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Date Joined Feb 2003
Total Posts : 1251
   Posted 7/12/2011 6:09 AM (GMT -6)   
You've made so much difference to her life and how she perceives surgery, well done :) Once you start sharing, it's amazing how many people either know some who has had or will. potentially face ostomy surgery in the future.

Thank you.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums


I'm not a complete idiot - some parts of me are missing!

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Date Joined Jun 2005
Total Posts : 981
   Posted 7/12/2011 6:24 AM (GMT -6)   
Good for you! I'm in the process of doing a story for a local magazine about my ileostomy because I want people to know I am not ashamed of it and life does go on after surgery, actually life begins after surgery. I am so happy with mine now because my life before was non existant, I have also told my GI that I would be happy to talk with anyone that may be facing this kind of surgery and they were thrilled and are going to take me up on the offer. There's always positives. So nice you have been able to help someone out Summer, take care

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Date Joined Dec 2010
Total Posts : 3332
   Posted 7/12/2011 7:32 AM (GMT -6)   
That's great, and funny too. I guess people don't see what they don't want to see. Glad you were able to help, and I'm sure this will only make your friendship even stronger.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Mum to Five
New Member

Date Joined Jul 2011
Total Posts : 19
   Posted 7/12/2011 8:57 AM (GMT -6)   
Thanks for sharing, Summer!! You've helped *me* with this story, too. :)

Forum Moderator

Date Joined Dec 2008
Total Posts : 16724
   Posted 7/12/2011 10:25 AM (GMT -6)   
summerstorm, I am scared that some day I will have to have surgery and having you and suebear visit the UC board and tell people how well you're doing has definitely helped to ease my mind. Thanks for being here, you have helped a lot of people.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion
Currently: Asacol (3200mg) + 6mp (25mg) + Pristiq (50mg) + Omeprazole (40mg) + Rowasa (4g) + Canasa (1g)

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 7/12/2011 11:58 AM (GMT -6)   
Like Doreen, I've talked to my GI as well to say that I'll speak to anyone facing this surgery. He told me that just before I told him that, he had a young woman (maybe 30) actually die from Crohn's or UC (can't remember which) because she refused the surgery. So sad when you think about how happy most of us are with our ostomies.

I tell just about anyone if it comes up as well. Not ashamed! I actually feel like it's a badge of honor, showing what I've gone through and what I'm willing to do to take control of my own life and really live.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Regular Member

Date Joined Sep 2009
Total Posts : 254
   Posted 7/12/2011 2:46 PM (GMT -6)   
I told all of my close friends when I had an ostomy bag and it was very comforting that we all had a sense of humor about it and it really never came up unless I brought it up and joked about it. Any friend that would think anything negative about you because of an ostomy is not a friend at all
21 Year Old Male

Diagnosed with Moderate/Severe Ulcerative Colitis May 2008
3 Flair ups (first flair- 2 months/Second Flair- 2 months/ Third flair- One week, then surgery)

-Full Ileostomy surgery done on july 22!
-J pouch DONE--January 6th

Living a COMPLETELY normal and active life with a J pouch!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 7/12/2011 9:10 PM (GMT -6)   
That's awesome that you could help put your friend's mind at ease. You go, girl! smilewinkgrin
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 7/12/2011 10:55 PM (GMT -6)   
Nice, you really helped her. Rosemary

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 7/13/2011 9:43 AM (GMT -6)   
It is surprising how many people know someone with eith Crohn's or UC and I have found from talking to my customers that there are quite a few who have relatives with an IBD. It has been really helpful to them to see me at work, looking well and telling them about my ileo and that having surgery isn't the end.

It is usually older customers who have grandchildren/nieces/nephews with it and they don't want to ask the child or parents too many questions as they are normally very ill having just been diagnosed. So I feel honoured to be able to reduce their fears a bit and tell them that there are plenty of things medicine can do now to help control the symptoms as too often the stuff they read in the papers about IBD or see in medical programmes are the worst case scenerios and this scares them silly.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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