• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Its gotta come out!

Crohn'sFor Life

Colon Free!
Location
Honolulu,
Well after a quick trip to the ER via the ambulance, two incidences of nearly bleeding to death in the ICU, two angiograms and a colonoscopy, I got myself a total colectomy.A brand spanking new stoma and am now lacking a colon.
 
Last edited:
You sound so strong, crazy disease ay, I had a similar thing recently went to hosp via ambulance. A week in ICU,6wks in hops. had a surgery to remove the exploded part of my bowel and next week the diseased part is being removed.
 

Spooky1

Well-known member
Location
South Northants
can't believe you attitude, amazing. think with such a positive outlook you're a natural born survivor. congrats and hope all goes well with your recovery.
 

Crohn'sFor Life

Colon Free!
Location
Honolulu,
Thanks for the words of encouragement!

I'm not strong or much of a survivor...just doing what anyone would do when forced into a situation like this.

Mahalo
 
Aloha Mahalo!! I've had my ileostomy, Bob, for 25 years because I was very sick & all other options were tried and failed. It saved my life as well at the young age of 17.

Think of it as your own personal port-a-potty or a shake-n-bake bag attached to a piece of tuppwerware. lol Feel free to PM me with any questions as you start your journey with your new friend.

~Gutless Wonder Woman :D
 

Nyx

Moderator
I was in the same situation almost 2 years ago now...turned out to be the best thing for me! I hope it works out well for you too :) Come visit us in the stoma sub-forum if you haven't already...
 

Crohn'sFor Life

Colon Free!
Location
Honolulu,
Support

Thanks for the support. Knowing that others have gone through the same procedure gives me the strength to carry on.

On a weird note, it can be hard to walk when the pain makes you feel like curling up (like a shrimp!)
 
I waved buh-bye to my colon about five months ago. Couldn't wait for that jerk to be gone. Like Cindy, it was the best thing for me too!

Keep popping the pain pills so you can move around. It's the one thing i learned from my surgery: the quicker and more you move around, the faster things start to work and heal. And so, managing the pain becomes important. In my first week, though, I resembled a shrimp ball as well!

Wishing you a good and speedy recovery!

Kismet
 
Kismet, I had mine removed about 5 months ago too. I had a sub-total colectomy though. The next op, to remove the rest sounds worse. Have you got this to look forward to as well?


Kaz xxx
 
Yep, Kaz, I do. When I went for my permanent ileostomy surgery, the surgeon didn't think I was strong enough for the proctocolectomy so he left the rectum and anus in for the 'time being.' Given I had a number of complications after my ileostomy and ended up being in the hospital for about seven weeks, I'm grateful that he made that decision. However, I'm NOT looking forward to the next surgery. Gah. When are you going to get yours done?

Kismet
 

Crohn's 35

Inactive Account
Yep, Kaz, I do. When I went for my permanent ileostomy surgery, the surgeon didn't think I was strong enough for the proctocolectomy so he left the rectum and anus in for the 'time being.' Given I had a number of complications after my ileostomy and ended up being in the hospital for about seven weeks, I'm grateful that he made that decision. However, I'm NOT looking forward to the next surgery. Gah. When are you going to get yours done?

Kismet
I heard that within two years the anus/rectum has to be closed up? Just wonderin'
 

Nyx

Moderator
@Pen...nope...I had my consult with the surgeon who's doing my next surgery and she said I can put it off for ten years if I want to. I thought there was a cancer risk, but apparently not. So, I'm going to get mine done as late as I possibly can. I have 8 years to go....lol
 

Terriernut

Moderator
Well after a quick trip to the ER via the ambulance, two incidences of nearly bleeding to death in the ICU, two angiograms and a colonoscopy, I got myself a total colectomy.A brand spanking new stoma and am now lacking a colon.
Yup...I was told body bag or stoma bag! I'm really glad you chose as I did to LIVE! Once you get past the recovery time (can be a doozy) you will be like us and feel like you have a new lease on life! (because you WILL)

Come on over to the stoma subforum...welcome to the club! We will be happy to give you plenty of support and lotsa
:ghug::hug::kiss:
 
Yes, I was told I can wait upto ten years too. Problem is trying to decide will I be as fit as I am now in ten years. I have heard there can be complications for Crohn's patients with this op so I tend to think if I am ok I'll leave well alone. It's not an easy decision. My surgeon said he would like to do it 6 -12 months after the sub-total. :eek2:

Kaz xxx
 

Crohn's 35

Inactive Account
Ha so I have been corrected. Another question, do you guys bleed or have bled in the past? Cause I don't, mostly my crohns is in the Ileum/ lower right Quad...now my question is can you ask for a bag or they will recommend it, cause I am sick of pain for 20 years and avoiding a possible 3rd resection, never healed since my second resection, idiot operated whilst I was infected. Can you ??? Just wonderin'...yeah I wonder alot I am blond lol.
 

Terriernut

Moderator
I didn't bleed too much the last flare that perforated my sigmoid. yes you can ask for a bag! It can be the best thing ever but alot of drs are afraid to mention it until it's practically an emergency. Even of it's temporary it might give you the time to heal up xxxxxxxx
 
I thought you would only be given a bag if the colon was the problem, not the small intestine? My colon was removed, it was a right mess, so the last bit of my small bowel made the stoma. I can't see what the benefit of a bag would be if the colon is ok.

Kaz xxx
 

Terriernut

Moderator
They can make an ileo out of your small intestine to rest your colon while removing your terminal ileum. Sadly no cure but can help.
Lower right quad pain certainly indicate colon!
 

Nyx

Moderator
I still have most of my colon (2/3 of it) and have a permanent colostomy. As long as you have intestine you can have a stoma :) We're sooooo lucky!! lol
 
Top