Colostomy advice/ stories

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dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 5/6/2009 6:27 PM (GMT -6)   
I am 20 years old and have had crohns for about 2 years and have recently had 4 surgeries in the past 5 weeks for abcesses and fistulas.  My doctors now tell me that my only option for any improvement will be a colostomy.  I agree with them but it is a big decision to make.  I was hopeing some of you could tell me your stories and give me advice.  Was a colostomy the right choice for you?  Did it stop you from having abcesses and surgeries?  How does haveing a bag affect your daily life?  Any advice and stories would be welcomed. 

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/6/2009 7:27 PM (GMT -6)   
dreamer06-I did have a temporary ileostomy for 7+ years to help with my Crohn's issues...mainly fistulas...and that with the continuation of Crohn's meds did control things for quite a while! BUT...I was unable to take some of the newer drugs out there now. Have you tried any of them?

With a colostomy you may be able to irrigate (you'd give yourself an enema once a day to go so you wouldn't have to wear a pouch) where as the output from an ileo is too liquid to do that.

Ostomies, in my opinion, do not hinder your life! In fact, after feeling crummy from Crohn's, you get a new lease on life!! It does take time to adjust to your "new you" but after the surgical recovery you realize how well you feel and it is AMAZING:)

Lastly, would you consider a second surgical opinion? If you are having any doubts, that may be a good idea.

Let us know if you have any other questions...I know more will be along to give their experiences!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/6/2009 7:59 PM (GMT -6)   
My heart goes out to you. I had fistulas and abscesses, too, which were horrible. I didn't want an ostomy either, but agreed to a temporary one, so I could heal from abscess surgery.

After having Crohn's for 7 years, I was pleasantly surprised by how much I enjoyed having an ileostomy. It gave me a freedom that I had not had in years. After 8 months of trying it out, I decided to make it permanent and have my colon and rectum removed.

It wasn't until that surgery that the fistulas and abscesses disappeared for good. I'm very happy being Crohn's free and find that having an ostomy does not stop me from doing anything I want to do. Good luck with your decision, and please keep us posted.
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 5/7/2009 5:31 PM (GMT -6)   
I have always had an active life and with active Crohn's I could not do the things I wanted to do
I got so sick I didn't have a choice but to have my colon removed. It is a big step and I needed
time to adjust to the idea. that was a year and a half ago and I am med free and disease free
and am in training to run a half marathon in july to raise money for crohn's colitis foundation. Many
of the young runners have crohn's or colitis and some have ostomies like me. the truth is you don't
know who does or who doesn't. One of the 20 year olds told me since they got their ostomy they feel
like they can enjoy life he is going to college out of town and living in a dorm and eating real food!
I know how hard it is when you are really ill and you have to decide medical treatment that can
change your life. There are so many questions you ask yourself. I feel like I got my life back and
it is even better now because I not only got well I have all these great people on this web site that
are there for each other and will offer you help and support. Good Luck, Fruitcake

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/7/2009 7:29 PM (GMT -6)   
i dont know about a colostomy, i have a perm ileo. But its really nice, lol. Much better than UC and it makes life so much easier!
It def doesnt keep me from doing anything and noone knows. I just told my best friends a few months ago and we had been swimming together, slept in the same bed together (not like that, lol) i had even changed clothes in front of the girl and they had NO idea. So it def doesnt show, and they forget all about it. I forget about it a good deal of the time too!
Its worth it to feel better and be healthy!
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