New to ostomy but visit Crohn's site

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hollys mom
Regular Member


Date Joined Jun 2004
Total Posts : 120
   Posted 8/10/2005 10:04 AM (GMT -6)   
Good morning from Texas. 
I would like to introduce myself.  I am Jan and our daughter Holly(age 31) has had Crohn's for 10 yrs.  She has suffered a great deal as all Crohn's people have.  Last year her gastro dr told her that her colon was getting to the point of needing to be removed.  Well, she prolonged it for a year.  Now, after her colonoscopy in May, the gastro & surgeon both agree that she does not have a choice.  Her colon is nearly totally blocked right at the entrance or exit depending on how you look at it.  Hmm. They are removing her entire colon, attaching a bag.  An ileostomy, correct?  The surgery is scheduled for Sept 9.  I am quite sure that someone there has had this done.  Please help us to know that she will be ok! 
 
Holly has a beautiful 5 yr old daughter.  And a runaway ex-husband(probably a good thing).  She gets lots of love and support from her family. 
 
Thank you for this site and for all of you doing such a good job!
I have learned quite a bit just reading some of the posts. 
Smiles and hugs, Jan

missyoungp1963
New Member


Date Joined Jul 2005
Total Posts : 5
   Posted 8/10/2005 9:06 PM (GMT -6)   
Hi Jan,
        I have been where your daughter is now with her Crohns. I am now 42 and recieved my illy when I was 32.. like your daughter I  prolonged my operation for as long as I could. I feel much better today...I can do things I couldn't do before and I don't spend my life in pain or in the bathroom...
      My youngest daughter was only 4 when I had my operation...she is now 14. I do have 2 older daughters one is 22 and the other 24. They do remember all the long hospital stays I had due to the the Crohns. Like your daughter mine attacked the colon..
      I had a wonderful surgeon and I do have a wonderful gastro doctor...I have had the same gastro doctor for the past 19 years..I once told him he had more pictures of my insides then I have of my outsides...
      Tell Holly ...she will be in my prayers...
Smiles, Pam

T Jane
Veteran Member


Date Joined May 2003
Total Posts : 785
   Posted Today 11:11 AM (GMT -6)   

Hi Holly's mom,    I remember you from the CD board when you posted last year.  I am so sorry that Holly hasnt gotten better.  I hate for anyone to have to have a ostomy but I am here to tell you, that as long as she can handle the emotional part of having a bag then I do believe that having this surgery will be the best thing she has ever done for herself.  I dont think it will bother her to much emotionally either because she sounds like a strong person , I was worried about that part of it myself but The truth is:  I have felt so much better sence having the bag that I cant beliveve I ever thought this could be a bad thing.  life is good again , not only good its great !!!! I am sure Holly will feel the same way once she recovers from the surgery.  It will take a while to recover.  some people are faster than others. I had alot of pain but it was all worth it ow that i'm better.  Good Luck to you and to Holly.  You can email me if you have other questions.

toniabuzzard@yahoo.com


 
I Just tell myself, it could be worse !!!
          "Even with a Bag!!!"
                Tonia                                                                


artist65
Regular Member


Date Joined Mar 2005
Total Posts : 49
   Posted 8/17/2005 6:22 AM (GMT -6)   
Hi Holly's mom...I am also a crohn's person who has the disease in the colon.  I am too facing the decision whether to have the ileo.  Like Holly I am trying to delay it.  But after every scope my GI always says "You're colon is a mess, it's getting to the point you have to consider the bag". I am 39 years old. I have 2 kids. I am a nurse by profession. My life at times is exhausting. Unfortunately, I am not only dealing with the misery of the disease but I am dealing with incontinence.  I have a consult at the Brigham and Women's in Boston to discuss it further. In my heart I know I should get this done. If I had to make one statement regarding what this diease is done to me, I would say I just don't look forward to anything anymore. Good luck Holly..I would love to hear how you are doing. It might give me courage. I would like to exchange e-mails. My name is Patty. You can contact me at salmelaj@aol.com

Cleo
Veteran Member


Date Joined Apr 2004
Total Posts : 992
   Posted 8/18/2005 4:20 PM (GMT -6)   
I had surgery in JAn. and was left with a colostomy. I thought life as I knew it was over. Actually it was! No more living around the bathroom, spending countless days in the hospital, and spending far too much $$ on TP! Life is sssooooo much better. Don't get me wrong. It took alot of soul searching and talks with my self to get to this point but it was all worth it. I have since gone back to school, and am now working again. Both of which I could not have done had I not had the surgery.

When I think back about how things were a year ago, I feel very lucky right now. I have the option of having it reversed but I doubt that I will take the route. I don't want to go back.
Cindy 
 
Life isn't like a bowl of cherries, it's more like a jar of Jalapenos... What you do today, might burn your "butt" tomorrrow!


~JID~
Regular Member


Date Joined Nov 2004
Total Posts : 111
   Posted 8/19/2005 12:39 PM (GMT -6)   

Hollys Mom,

I too have talked to you in the CD part of this great site. My DH just had a permamemt Colostomy 2 weeks ago and he feels great in that aspect, no more worrying about a bathroom or anything like that. He although has had complications due to internal infections that he had BEFORE the surgery which helped lead us to this point he is great with it. I think I am having a harder time with it then he is....

Hang in there he is 32 and has had it since he was 17....She will be happy she did!


                       Johnna
       DX with IBS and Vulvadenyia   
 DH diagnosed at 17. Currently on Prednisolone, Remmicade, Pentasa and Fosomax.
Bowel Resection April 04, 5surgeries since June 05 for Peri-Rectal CD (newly diagnosed area) Permanent Colostomy July 05
 


AnnieC
Regular Member


Date Joined Aug 2005
Total Posts : 38
   Posted 8/20/2005 3:28 PM (GMT -6)   
Patty,
Could you have colectomy done (colon removed and the small
bowel attached to the rectum? That way you wouldn't have to
have the bag. Or is there a problem with the small bowel, too?
Annie
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